Concerns, Desires and Expectations of Surgery for Adolescent Idiopathic Scoliosis:

A Comparison of Patients’, Parents’ & Surgeons’ Perspectives

by

Unni G. Narayanan

CAUTION! DANGEROUS CURVES AHEAD

A thesis submitted in conformity with the requirements

for the degree of Master of Science

in Clinial Epidemiology & Health Care Research

Graduate Department of Health Policy, Management & Evaluation

University of Toronto

© Copyright by Unni G. Narayanan (2008)

ii

Concerns, Desires and Expectations Of Surgery For Adolescent

Idiopathic Scoliosis: A Comparison Of Patients’, Parents’ & Surgeons’

Perspectives.

Master of Science, 2008

Unni G. Narayanan

Department of Health Policy, Management & Evaluation

University of Toronto

ABSTRACT

This study explored the concerns, desires (goals) and expectations of adolescents

undergoing surgery for idiopathic scoliosis, and contrasted their priorities with those of

their parents and surgeons. Parents were more concerned than their children about

the consequences of scoliosis and of surgery. With the exception of improving physical

appearance, surgeons' goals of surgery were different from those of either the patients

or parents. There was little agreement among surgeons about the natural history of

scoliosis, other goals of surgery and the likelihood of specific outcomes. Parents

wanted and expected more from surgery than their children. Parents and patients had

greater expectations of surgery than surgeons. Although adolescents had different

priorities from their parents, parents were aware of these differences and reliably

predicted their children’s priorities. These findings have important implications on

shared decision-making and informed consent, and might contribute to better

understanding and measurement of outcomes that matter to patients.

iii

ACKNOWLEDGEMENTS

This project has been a labour of love, that I could not have completed without the

encouragement, support, assistance and guidance of many individuals to whom I owe

a debt of gratitude.

At the top of that list is James Wright, my supervisor, mentor, colleague and friend. He

was instrumental in providing me the opportunities to launch my academic career and

ultimately made this possible. I am indebted to Jim for his sage advice, his incredibly

prompt feedback and for his infinite patience through this journey that must have felt

interminable.

I was fortunate in my choice of committee members. I am grateful to Dr. Brian

Feldman for his enthusiastic interest in the project, for his keen insight and guidance,

and above all for his encouragement and support throughout. It was Dr. Murray Krahn

who sparked my interest in the subject of shared decision making, and provided me

with a new appreciation for the perspective of the patient both from his teaching and

his research. Dr. Hilary Llewellyn Thomas, while not officially on my committee,

willingly provided me additional guidance in this area despite her relocation to

Dartmouth shortly before I began this journey. I am thankful to Brian, Murray and

Hilary for their support.

My colleagues in the Division of Orthopaedics at The Hospital for Sick Children have

been incredibly supportive. First William Cole and later Benjamin Alman in their

capacity as the Head of the Division with the support of Doug Hedden, Ben Alman, Jim

Wright and Andrew Howard provided me the protected time I needed to complete this

project. Doug Hedden, Ben Alman, Jim Wright and Andrew Howard not only

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contributed their patients to this study, also gave freely of their own time and effort to

participate in the pilot and final surgeon surveys. To them all, I am grateful.

This project would not have been possible without the help of Sam Donaldson, who, as

the research coordinator extraordinaire for the scoliosis trial, allowed me unfettered

access to participants and data. Sam’s assistance was invaluable and her interest in

this project most gratifying. I cannot thank her enough.

I am indebted to the participants of this study, the teenagers who were willing to

spend hours of their time to share their stories with me, and to their parents who did

the same. They opened my eyes and that experience has left an indelible influence on

the way I practice orthopaedic surgery. I wish these young women and men well.

Finally, this project could only be completed because of the tremendous sacrifices my

family has had to make. I could not ask more of my beloved wife, who made it possible

to for me to have the time to see this through, while providing me with the support,

encouragement and the right amount of goading to help me bring this to fruition. To

Anita and my adorable children Tara and Rohan who endured so much, I love you.

The project was generously funded through a two year Health Services Research

Fellowship award from the American Academy of Orthopaedic Surgeons & the

Orthopaedic Research & Education Foundation. Additional funding was obtained

through Trainee Start Up fund from The Hospital for Sick Children Foundation.

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TABLE OF CONTENTS

Abstract ii

Acknowledgements iii

Table of Contents v

List of Figures xi

List of Tables xiii

Chapter 1 Introduction 1 1.1 Background 1

1.2 Purpose 4

1.3 Outline 4

Chapter 2 Adolescent Idiopathic Scoliosis 6

2.1 Background 6

2.2 Natural History & Clinical Course 6

2.3 Treatment Rationale 8

2.4 Treatment Options 8

2.5 Evaluation of Outcomes 9

2.6 Preferences: What do patients want 10

2.7 Preferences: What’s missing? 13

2.8 Rationale for this Project: Why bother? 14

2.9 Aims of Thesis 14

Chapter 3 Patient Priorities: Theoretical Perspectives 15

3.1 The Evolution of Patient-Centred Care 15

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3.2 Patient Preferences and Priorities 17

3.3 The Importance of Patient Priorities 18

3.4 Defining Expectations 20

3.5 Expectation & Satisfaction: Expectancy Disconfirmation 25

3.6 Issues in Measuring Patient Priorities 30

3.7 New Conceptual Framework 32

3.8 Summary 38

Chapter 4 Measurement of Concerns, Desires and Expectations 40

4.1 Introduction 40

4.2 Development of The Questionnaires 40

4.3 Patient Questionnaire 43

4.3.1 Section I 43

4.3.2 Section II 44

4.3.3 Section III 44

4.3.4 Section IV 45

4.3.5 Section V 46

4.3.6 Section VI 47

4.3.7 Section VII 48

4.3.8 Section VIII 49

4.4 Parental Questionnaire 51

4.5 Surgeon Questionnaire 52

4.5.1 Section I 52

4.5.2 Section II 52

4.5.3 Section III 52

4.5.4 Section IV 53

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4.5.5 Section V 53

4.5.6 Section VI 53

4.6 Summary 54

Chapter 5 Methods 56

5.1 Introduction 56

5.2 Study Design 56

5.3 Setting & Participants 56

5.4 Ethics Approval 57

5.5 Recruitment 58

5.6 The Interviews 58

5.7 Surgeon Survey 59

5.8 Analyses 60

5.8.1 Analysis of Concerns 60

5.8.2 Analysis of Desires (wishes) & Goals of Surgery 65

5.8.3 Analysis of Expectations of Surgery 69

5.8.4 Other Data 75

5.9 Sample Size and Power Estimation 76

5.10 Respondents 76

5.11 Non-Respondents 78

Chapter 6 Concerns Regarding Scoliosis & Surgery for Scoliosis 81

6.1 Concerns Regarding Scoliosis 81

6.1.1 Patient Concerns Regarding Scoliosis 81

6.1.2 Parents’ Concerns Regarding Scoliosis 84

6.1.3 Parents Perception of their Child’s Concerns 87

viii

6.1.4 Surgeons’ Concerns Regarding Scoliosis 88

6.1.5 Comparison of Patients’, Parents’ and Surgeons’ Concerns 90

6.2 Concerns Regarding Surgery for Scoliosis (Adverse Events) 94

6.2.1 Patients’ Concerns Regarding Surgery for Scoliosis 94

6.2.2 Parents’ Concerns Regarding Surgery for Scoliosis 96

6.2.3 Parents’ Perception of their Child’s Concerns 97

6.2.4 Comparison of Patients’, Parents’ and Parents’ Perception

of their Children’s Concerns 98

6.3 Summary 104

Chapter 7 Desires (Goals) of Surgery for Scoliosis 105

7.1 Patients’ Desires (wishes) of Surgery for Scoliosis 106

7.2 Parents’ Desires (wishes) of Surgery for Scoliosis 110

7.3 Parents’ Perception of their Children’s Desires (wishes)

of Surgery for Scoliosis 114

7. 4 Comparison of Patients’ & Parents’ Desires of Surgery 117

7.5 Surgeons’ Goals of Surgery for Scoliosis 120

7.6 Comparison of Patients’ and Parents’ Desires (wishes) with

Surgeons’ Goals of Surgery for Scoliosis 125

7.7 Summary 128

Chapter 8 Expectations of Natural History & Surgery for Scoliosis 130

8.1 Prior Expectations of Scoliosis: Perception of Natural History 130

8.1.1 Patients’ Prior Expectations of Scoliosis 131

8.1.2 Parents’ Prior Expectations of Scoliosis 134

8.1.3 Parents’ Perception of their Childs’ Prior Expectations 137

ix

8.1.4 Surgeons’ Expectations of Scoliosis 138

8.1.5 Comparison of Patients’, Parent’s and Surgeons’

Prior Expectations of Scoliosis 141

8.2 Expectations of Desired Outcomes of Surgery for Scoliosis 146

8.2.1 Patients’ Expectations of Surgery 147

8.2.2 Parents’ Expectations of Surgery 153

8.2.3 Surgeons’ Expectations of Surgery 159

8.2.4 Comparison of Patients’, Parent’s and Surgeons’

Expectations of Surgery 162

8.3 Expectations of Undesirable Events of Surgery for Scoliosis 168

8.3.1 Patients’ Expectations of Undesirable Events 169

8.3.2 Parents’ Expectations of Undesirable Events 171

8.3.3 Surgeons’ Expectations Undesirable Events 173

8.3.4 Comparison of Patients’, Parent’s and Surgeons’

Expectations of Undesirable Events of Surgery 175

8.4 Summary 177

Chapter 9 Discussion 180

9.1 Conclusions: Patient, Parent & Surgeon Priorities 180

9.2 Limitations 191

9.3 Summary of Findings & Significance of the Research 193

9.4 Future Research 198

References 200

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Appendices 208

Appendix A Patient Consent Form & Questionnaire 208

Appendix B Parent Consent Form & Questionnaire 225

Appendix C Surgeon Survey Questionnaire 242

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LIST OF FIGURES

Figure 3.1 New conceptual framework 37

Figure 4.1 Linking the Questionnaire to the Conceptual Framework 50

Figure 6.1 Patients’ mean level of concerns overall and by domain 82

Figure 6.2 Parents’ mean level of concerns overall and by domain 85

Figure 6.3 Comparison of Patient’s, Parents’ and Surgeons’ concerns 91

Figure 6.4 Patient’s vs Parents’ perception of Child’s concerns 93

Figure 6.5 Patients’ vs Parents’ short-term concerns regarding surgery 99

Figure 6.6 Patients’ vs Parents’ long-term concerns regarding surgery 100

Figure 6.7 Patients’ vs Parents’ perception of Child’s short-term concerns

about surgery 102

Figure 6.8 Patients’ vs Parents’ perception of Child’s long-term concerns

about surgery 103

Figure 7.1 Patients’ mean strength of desires overall & by domain 106

Figure 7.2 Parents’ mean strength of desires overall & by domain 110

Figure 7.1 Patients’ mean strength of desires overall & by domain 106

Figure 7.3 Comparison of Patients’ & Parents’ Desires of Surgery 118

Figure 7.4 Patients’ vs Parent’s perception of their children’s desires 119

Figure 7.5 Surgeons’ Goals of Surgery 120

Figure 8.1 Patients’ Expectations regarding Scoliosis (natural history) 133

Figure 8.2 Parents’ Expectations regarding Scoliosis (natural history) 136

Figure 8.3 Surgeons’ Expectations regarding Scoliosis (natural history) 140

Figure 8.4 Patients’ vs Parents’ Expectations about Scoliosis (natural history)142

Figure 8.5 Patients’ vs Parents’ perception of their Children’s Expectations 143

Figure 8.6 Comparison of Patients’, Parents’ and Surgeons’ Expectations 145

Figure 8.7 Patients’ Expectations of (Desirable) Outcomes of Surgery 148

xii

Figure 8.8 Patients’ Expectations of Surgery: Minimal Acceptable Result to be

satisfied 152

Figure 8.9 Parents’ Expectations of (Desirable) Outcomes of Surgery 154

Figure 8.10 Parents’ Expectations of Surgery: Minimal Acceptable Result to be

satisfied 158

Figure 8.11 Surgeons’ Expectations of (Desirable) Outcomes of Surgery 162

Figure 8.12 Comparison of Patients’ vs Parents’ Expectations of (Desirable)

Outcomes of Surgery 164

Figure 8.13 Comparison of Patients’ vs Parents’ Expectations of Surgery: Minimal

Acceptable Result to be satisfied 165

Figure 8.14 Comparison of Patients’, Parents’ & Surgeons’ Expectations of

(Desirable) Outcomes of Surgery 166

Figure 8.15 Comparison of Patients’, Parents’ and Surgeons’ Expectations of

Undesirable events following Surgery 176

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LIST OF TABLES

Table 6.1 Patients’ Concerns Regarding Scoliosis 82

Table 6.2 Parents’ Concerns Regarding Scoliosis 85

Table 6.3 Surgeons’ Concerns Regarding Scoliosis 88

Table 6.4 Comparison of Concerns Regarding Scoliosis 90

Table 6.5 Patients’ Concerns Regarding Surgery 95

Table 6.6 Parents’ Concerns Regarding Surgery 96

Table 6.7 Patients’ vs Parents’ Overall Concerns regarding Surgery 98

Table 6.8 Patients’ vs Parents’ perception of Child’s Concerns re Surgery 101

Table 7.1 Strength of Patients’ Desires for Goals of Surgery 108

Table 7.2 Patients’ Reasons for Surgery ranked in descending order 109

Table 7.3 Strength of Parents’ Desires for Goals of Surgery 112

Table 7.4 Parents’ Reasons for Surgery ranked in descending order 113

Table 7.5 Parents’ perceptions of their Children’s Desires of Surgery 115

Table 7.6 Parents’ Perception of their Children’s Reasons for Surgery ranked in

descending Order 116

Table 7.7 Comparison of Patients’ & Parents’ Desires of Surgery 117

Table 7.8 Surgeons’ Goals of Surgery in descending order of frequency 123

Table 7.9 Surgeons’ Goals of Surgery in descending order of importance 124

Table 7.10 Top 5 ranked Reasons for/Goals of Surgery for Patients, Parents &

Surgeons 125

Table 7.11 Comparison of Reasons for/Goals of Surgery for Patients, Parents &

Surgeons 127

Table 8.1 Patients’ Expectations regarding Scoliosis (natural history) 131

Table 8.2 Parents’ Expectations regarding Scoliosis (natural history) 134

Table 8.3 Parents’ Perception of their Childs’ prior Expectations of Scoliosis 137

xiv

Table 8.4 Surgeons’ Expectations regarding Scoliosis (natural history) 139

Table 8.5 Comparison of Patients’, Parents’ and Surgeons’ Expectations of

Scoliosis (natural history) 141

Table 8.6 Patients’ Expectations of (Desirable) Outcomes of Surgery 147

Table 8.7 Patients’ Expectations of Surgery: Minimal Acceptable Result to be

satisfied 151

Table 8.8 Parents’ Expectations of (Desirable) Outcomes of Surgery 153

Table 8.9 Parents’ Expectations of Surgery: Minimal Acceptable Result to be

satisfied 157

Table 8.10 Surgeons’ Expectations of (Desirable) Outcomes of Surgery 161

Table 8.11 Comparison of Patients’, Parents’ and Surgeons’ Expectations of

(Desirable) Outcomes of Surgery 163

Table 8.12 Patients’ Expectations (likelihood) of Undesirable Events following

Surgery 170

Table 8.13 Parents’ Expectations (likelihood) of Undesirable Events following

Surgery 172

Table 8.14 Surgeons’ Expectations (likelihood) of Undesirable Events following

Surgery 174

Table 8.15 Comparison of Patients’, Parents’ and Surgeons’ Expectations of

Undesirable events following Surgery 175

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CHAPTER 1

Introduction

1.1 Background

Adolescent idiopathic scoliosis (AIS) is characterized by an abnormal curvature of the

spine acquired between puberty and skeletal maturity. AIS is the most prevalent

musculoskeletal deformity affecting children (Kelsey 1982). The primary problem

associated with idiopathic scoliosis is the effect of the spinal deformity on physical

appearance. Less clear is the potential relationship of idiopathic scoliosis with late onset

of back pain, restrictive lung disease, and cor pulmonale (Nachemson 1968; Nilsonne

and Lundgren 1968; Weinstein, Zavala et al. 1981; Weinstein, Dolan et al. 2003).

Treatment of AIS is primarily recommended to prevent progression of the deformity

and/or to correct existing deformity. Decisions regarding treatment of scoliosis are often

made in the absence of any symptoms or perceived difficulties in order to avoid potential

future problems that the patient (or parents) may never experience. Surgical treatment

of scoliosis is a major undertaking with significant risks and unclear long term

consequences. Furthermore, in the face of uncertainty about the natural history of

untreated idiopathic scoliosis for individual patients, their concerns, desires and

expectations ought to be considered when making decisions about treatment. Yet, little

is known about the priorities of patients undergoing surgery for scoliosis. Consequently,

these issues are seldom elaborated during patient-surgeon interactions nor can they be

incorporated in outcome measures to quantify the benefits relevant to patients following

surgical treatment.

The concept of health, traditionally represented by a medical model, was originally

defined as the absence of disease. In recent years, newer models have been proposed

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that attempt to reflect the full complexity of health, by incorporating a more holistic

account of the human experience, and by recognizing individual rights and

empowerment (Larson 1999; WHO 2001). This evolution in the conceptualization of

health has been accompanied by changes in the way we measure health and disease,

reflected by an array of outcome measures that quantify a wide range of health-related

phenomena, including physical and psycho-social function, patient satisfaction and

quality of life (Greenfield and Nelson 1992). Interest in patients’ perspectives and the

concepts of patient-centred care have grown (Gerteis, Edgman-Levitan et al. 1993) with

our understanding that the impact of health-care interventions are more meaningfully

assessed using patient-based outcome measures. Equally important, are patients’

perspectives prior to, and during their care to allow the incorporation of their values or

preferences during the process of medical decision making (1993; Kassirer 1994).

Patient preferences are values expressed by patients for particular health states or

outcomes, which influence their choice (or preference) for specific treatment options

(Bowling and Ebrahim 2001). Knowledge of patient preferences is essential for shared

(patient-doctor) decision making, which is believed to enhance the quality of health care

(O'Connor, Rostom et al. 1999). Patients’ preferences are influenced by concerns about

their medical condition and its treatment, their wishes or desires, and their expectations

of the treatment and its outcomes (Uhlmann, Inui et al. 1984; Kravitz 1996). Patient

priorities (desires and expectations) also play an important role in the formulation of

patient satisfaction (Thompson and Sunol 1995). Achieving patient satisfaction is not

only an important goal but is also considered one of the key indicators of the quality of

care received (Donabedian 1982). Addressing patients’ priorities by alleviating their

concerns, fulfilling their wishes and meeting their expectations are desirable goals in

themselves (Carr-Hill 1992). Moreover, the process of eliciting patients’ priorities during

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the shared medical decision-making process may also contribute to patient satisfaction

(Fitzpatrick and Hopkins 1983). Finally, understanding patients’ priorities is essential for

the development of patient-based outcome measures. Patient-based outcomes

instruments will only be meaningful if the questions asked of patients reflect what’s

relevant and important to them (Amadio 1993; Wright, Rudicel et al. 1994).

Little is known about patient concerns, desires and expectations in the context of

childhood diseases. For example, how well are children’s priorities and preferences

understood or even taken into consideration during medical decision making? Parents

most often make decisions on behalf of their children, but are their concerns, desires

and expectations the same as those of their children? Whose perspective matters

most? Is this information even important or useful? Little is known about parental

expectations and whether they are concordant with their children’s expectations. If

indeed the goal of patient participation in decision making is desirable, and the

incorporation of patient preferences important, then the knowledge of patient priorities

becomes essential (Bowling and Ebrahim 2001). Similarly, if patient satisfaction with

outcome is an important goal, then an understanding of patient concerns, desires and

expectations becomes imperative (Carr-Hill 1992). The elicitation of patients’ priorities

might provide important insight into hitherto unknown patient preferences which in turn

might influence the process of informed choice and decision making, true informed

consent, and facilitate the evaluation of outcomes that matter most to patients (Entwistle,

Renfrew et al. 1998).

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1.2 Purpose

The purpose of this thesis was to determine adolescents’ concerns about their scoliosis,

their desires and expectations of treatment, and to contrast their priorities with those of

their parents and their surgeons.

1.3 Outline

Chapter 2 provides background information about adolescent idiopathic scoliosis, and

reviews what’s known about the natural history of the condition. The indications for

treatment and the treatment options are discussed. The literature on patient priorities

and preferences, as it pertains to adolescent idiopathic scoliosis, is reviewed and the

limitations discussed. The chapter elaborates on the rationale for selecting idiopathic

scoliosis to study these phenomena and concludes with an outline of the specific

objectives of this thesis.

In Chapter 3 the literature on patient priorities is reviewed. Definitions for the concepts

of patient concerns, desires and expectations are discussed. The chapter outlines the

theories and empirical evidence that link these components of priorities to patient

satisfaction. Issues pertaining to the measurement of patient priorities are discussed,

which influenced the methods employed in this research. A new conceptual framework

is presented, which provides the foundation for this investigation.

Chapter 4 describes the first phase of the project, which involved the development of

three versions of the questionnaire to measure the constructs mentioned above, in

patients, parents and surgeons respectively. The questionnaires were developed based

on the the conceptual framework described in Chapter 3.

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Chapter 5 describes the objectives and methods employed for the second and third

phases of this research. Questionnaires were used in the second stage for the separate

structured interviews of adolescent children with scoliosis and their parents. Surgeons,

who treated these patients, were provided with a self-administered version of the

questionnaire. In the third phase, a national survey of all surgeons treating idiopathic

scoliosis was conducted. Specific hypotheses were articulated and the types of

analyses described. Finally, the participants of the study and the interview process are

described.

Chapters 6 – 8 describe the study results. Chapter 6 describes and compares the

concerns reported by children, their parents and surgeons about the perceived problems

of scoliosis, and also their respective concerns about the potential undesirable or

adverse events of surgery for scoliosis. Chapter 7 describes the findings pertaining to

patients’ and parents’ desires (wishes) of surgery for scoliosis, which are compared with

surgeons’ reported goals of surgery. In Chapter 8, expectations about the natural history

of untreated idiopathic scoliosis are described from patients’, parents’ and surgeons’

perspectives, followed by a description and comparison of their expectations of the

desired and undesirable outcomes of the surgical treatment of scoliosis.

Chapter 9 discusses the conclusions of this study and the implications of these findings,

including the application of these methods to other areas of paediatric musculoskeletal

conditions, where the knowledge of patients’ and parents’ priorities might play an

important part in influencing shared decision making, and our understanding of patient-

based outcomes. Limitations of the research methods are discussed. Finally, future

research is discussed.

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CHAPTER 2

Adolescent Idiopathic Scoliosis

2.1 Background

Adolescent idiopathic scoliosis (AIS) is the most prevalent musculoskeletal deformity

affecting children (Kelsey 1982). Scoliosis is defined by an abnormal curvature of the

spine that measures at least 10 degrees on an antero-posterior radiograph. The

curvature is the result of a 3-dimensional deformity most apparent in the coronal plane

(from the back or front). Although abnormalities of the neuromuscular system have been

described, the etiology of idiopathic scoliosis, as the name implies, remains largely

unknown. AIS most often has its onset between puberty and skeletal maturity. The

estimated prevalence of idiopathic scoliosis is 3 – 9 per 1000 adolescents, with girls

affected 5 times more frequently than boys (Morais, Bernier et al. 1985).

2.2 Natural History & Clinical Course

Knowledge of the consequences of untreated scoliosis is incomplete (Nachemson 1968;

Nilsonne and Lundgren 1968; Weinstein, Zavala et al. 1981; Weinstein 1986; Weinstein,

Dolan et al. 2003). The deformity may be static or become progressively worse with

time. The rate of progression of the curve and its final magnitude are variable and

related to skeletal growth as well as the size of the curve at any given time.

Progression may halt or slow-down with the completion of spinal growth at skeletal

maturity (Rogala, Drummond et al. 1978; Lonstein and Carlson 1984; Bunnell 1986).

The deformity associated with AIS effects patients’ physical appearance. The deformity

has been associated with significant psychological consequences (Bengtsson, Fallstrom

et al. 1974; Kahanovitz and Weiser 1989).

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In addition to the deformity, scoliosis may result in cardio-pulmonary dysfunction.

However, clinically significant reduction of pulmonary function, due to restrictive lung

disease and secondary cor pulmonale, occurs only with severe thoracic curves

(Bergofsky, Turino et al. 1959; Pehrsson, Bake et al. 1991; Pehrsson, Larsson et al.

1992). Furthermore, the studies reporting this association may have been confounded

by the presence of other concomitant pulmonary or cardiac conditions or age related

causes of deconditioning (Weinstein, Zavala et al. 1981; Branthwaite 1986).

The association of increased back pain with scoliosis is also controversial. While reports

from Scandinavia have shown twice the rate of disability due to back pain in this

population (Nachemson 1968; Nilsonne and Lundgren 1968), a long term study of

untreated idiopathic scoliosis patients in Iowa showed minimal increase in the overall

rate of back pain when compared to the reported incidence in an age-matched control

group without scoliosis Although backache was slightly more common in adults with

scoliosis, the rate of disabling back pain requiring either a doctor’s appointment or

hospitalization was more common in the control group (Weinstein, Zavala et al. 1981).

At 50 years of follow-up, however, approximately 60% of those with untreated idiopathic

scoliosis reported chronic back pain compared with 35% of a (different) group of age-

and sex-matched controls without scoliosis. Of those who reported pain, approximately

two-thirds had only mild or moderate pain in both groups (Weinstein, Dolan et al. 2003).

Although patients with idiopathic scoliosis in some cross-sectional studies have had

reduced exercise capacity (endurance time) and work capacity (Chong, Letts et al. 1981;

Kearon, Viviani et al. 1993), their daily function is similar to that of the general

population.

8

Older studies that reported higher than predicted mortality rates for scoliosis patients,

were confounded by the inclusion of patients with congenital and neuromuscular

scoliosis (Weinstein, Zavala et al. 1981). More recent studies have shown that

adolescent idiopathic scoliosis patients are not at increased risk for early death

(Pehrsson, Larsson et al. 1992; Weinstein, Dolan et al. 2003).

2.3 Treatment Rationale

Some orthopaedic surgeons believe that the most important indication for treatment of

idiopathic scoliosis is the physical appearance or “cosmetic” concern associated with the

deformity. The objectives of treatment, therefore, are to achieve correction of an existing

deformity or to prevent a worse deformity in the future. Others believe that prevention of

future cardiopulmonary dysfunction and future back pain are the primary reasons for

aggressive treatment of scoliosis (Lonstein 1996). As discussed, this rationale is more

controversial because it is not entirely clear that these risks are the result of untreated

progressive scoliosis. Moreover, and more importantly, the evidence that surgery

reduces these risks remains elusive (Poitras, Mayo et al. 1994).

2.4 Treatment Options

Treatment options of adolescent idiopathic scoliosis include observation, bracing or

surgery. Small and non-progressive curves are “treated” by observation. Patients are

monitored by clinical and radiographic evaluations at intervals ranging from four to nine

months. In skeletally immature (growing) children, moderate curves with the potential to

progress, or smaller curves that have progressed, are treated with braces. Spinal fusion

is reserved for larger curves or those that progress despite bracing. Both currently

available forms of intervention, bracing and surgery, are physically, emotionally and

psychologically demanding (Fallstrom, Cochran et al. 1986; Kahanovitz and Weiser

9

1989; MacLean, Green et al. 1989). The typical brace is a rigid body jacket, worn under

clothing, usually recommended for full time daily use (ideally more than 20 out of 24

hours each day). Surgery involves an instrumented fusion of the spine across multiple

segments, which is associated with small but significant risks including paraplegia.

2.5 Evaluation of Outcomes

The evaluation of the treatment of scoliosis has traditionally focused on technical

outcomes, such as radiographic measurements of curve magnitude and spinal balance.

More recent attention has been paid to patient-oriented outcomes, including patient

satisfaction. Two disease specific instruments that incorporate patient oriented outcome

measures have been developed and validated. The Quality of Life Profile for Spinal

Deformities (QLPSD) and the Scoliosis Research Society (SRS) Surgical Outcomes

questionnaire (Climent, Reig et al. 1995; Haher, Gorup et al. 1999). The latter was

developed specifically to evaluate and compare the results of surgery for idiopathic

scoliosis and to determine patient satisfaction. These instruments are increasingly being

used to report outcomes (Climent and Sanchez 1999; White, Asher et al. 1999).

The relationship between objective technical and subjective patient-based outcomes

remains unclear. In a meta-analysis of the English literature on the surgical treatment of

adolescent idiopathic scoliosis, Haher et al compared measures of patient satisfaction

with “process measures of care” (Haher, Merola et al. 1995). By process measures, the

authors referred to radiographic measures of outcome including magnitude of correction

in degrees and percent correction in the coronal plane. Although they found that patient

satisfaction best correlated with the degree of curve correction, this study was flawed in

many respects. Inclusion criteria for studies in this “meta-analysis” were not defined on

the basis of quality. Consequently, the quality of studies included in this review was

10

variable, and included few prospective studies and no randomized trials. Patient

satisfaction was not uniformly measured in the studies that were selected. In several

studies, patient satisfaction was substituted by a variety of proxy outcome variables that

were assumed to represent satisfaction, raising serious concerns about the validity of

the analyses. Finally, examination of the data suggests that the high correlation found

between magnitude of correction and patient satisfaction may have been spurious,

influenced in large part by outliers.

With the use of better standardized instruments such as the SRS outcomes

questionnaire, little correlation has been demonstrated between clinical outcomes,

including patient satisfaction, and conventionally defined radiographic measures of

success (D'Andrea, Betz et al. 2000). Radiographic measurements have also been

shown to correlate poorly with objective measures of cosmesis (Theologis, Jefferson et

al. 1993). Therefore, these conventional radiographic measures cannot be assumed to

correspond with patients’ perceptions of their outcomes.

2.6 Preferences: What do Patients Want?

In the context of idiopathic scoliosis outcomes instruments, the measurement of patient

satisfaction with outcome has not been based on a theoretical framework. Little

attention has been paid to the preconditions and possible determinants of patient

satisfaction, which include patient priorities and preferences.

Bunch and Chapman explicitly explored patient preferences in decision making for

surgical treatment of adolescent idiopathic scoliosis (Bunch and Chapman 1985). Using

a multi-attribute utility model, they assessed patient preferences for two techniques of

surgical treatment by measuring their utilities for specifically selected attributes. The two

11

surgical techniques were the conventional Harrington rod instrumentation followed by

casting, and Luque sub-laminar instrumentation without post-operative casting. The

following four attributes were selected: the nature of after-care, the risk of reoperation,

the risk of nerve damage, and the percentage of curve correction. Preferences were

elicited from a heterogenous group of patients, one or both their parents, a group of

orthotists and orthopaedic surgeons. In considering which type of surgery to have,

avoiding major post-operative complications such as nerve damage and reoperation

were deemed to be more important than the percentage of curve correction achievable

or the need for post-operative immobilization. There was remarkable similarity across all

four groups, in the rating of the relative importance of the four attributes. The authors

concluded that the values of surgeons, patients and family members are virtually

identical and that surgeons could serve as a good proxy for the “informed” patient.

The study of Bunch and Chapman had several limitations. First, the analysis was

framed in the constrained context of the four selected attributes which were chosen by

the surgeons, not by patients. The assumption that patients would value these chosen

attributes as the most important ones to consider in making their decision imposes the

surgeons’ perspective on the process, and ignores other factors that patients might wish

to consider. For instance, we know that patients do not evaluate their outcomes based

on radiographic criteria, much less the percentage of curve correction. Second, at best

this study informs us about what patients most wish to avoid, but it still leaves us unclear

about what it is they do want. Finally, the relevance of the study is limited because both

these surgical procedures have long since been replaced by a new generation of

powerful instrumentation techniques that obviates the need for post-operative

immobilization and avoids the increased risk of neurologic damage associated with sub-

laminar wiring. These technical advances have, however, not been accompanied by an

12

improved understanding of the priorities and preferences of patients with adolescent

idiopathic scoliosis.

Bridwell et al performed a cross-sectional survey of a pre-operative cohort of patients

with idiopathic scoliosis, and their parents, from four different centres in the United

States, in order to assess independently, patients’ and parents’ concerns about surgery,

reasons for having surgery and their expectations for treatment, and scar preference

(Bridwell, Shufflebarger et al. 2000). Although patients and parents had similar concerns

regarding surgery and similar expectations overall, individual patients tended to have

different reasons for surgery and different concerns and expectations regarding surgery

than their parents. However, these differences were small. This study has several

limitations. First, the constructs of concerns and expectations were not defined and their

operationalization did not appear to be based on any conceptual framework. Second,

the development of the questionnaire was not described. The items were presumably

generated by the investigators, with no reported patient or parental involvement to

ensure that issues relevant to them were included in the questionnaire. This imposition

of surgeons’ values has the potential for biasing the conclusions. One is still left

wondering if the most important priorities identified in this study would indeed be the

same had the patients been asked directly. Third, some of the items were quite

technical in their wording. Fourth, there was no description of any validation of the

questionnaire, which was self-administered. For these reasons, it is conceivable that

items might have been interpreted differently by different participants, and the same

responses of different participants might mean different things. Fifth, the authors

reported some incomplete responses, while they chose to ignore other responses

because they assumed that the respondent “did not seem to have a full understanding of

the questions asked”. Sixth, no a priori hypotheses were declared and the multiple

13

comparisons threaten the credibility of the study’s conclusions. Nonetheless, this is the

first published contemporary study that seeks to explore these important questions

related to patients’ and parental priorities and preferences.

2.7 Patient Preferences: What’s Missing?

Little is known about how adolescents with scoliosis view their condition, what they

believe are its consequences, and how these may be of concern to them. In the study

by Bridwell et al, patient concerns were limited to the risks or complications of surgery

and did not pertain to the actual diagnosis and the perceived consequences of idiopathic

scoliosis (Bridwell, Shufflebarger et al. 2000). The goal of treatment of idiopathic

scoliosis is often preventive, and therefore decisions are made in the absence of any

experienced (or even perceived) problem at the time, in order to avoid potential future

problems that the patient (or parents) may never come to experience. How does this

impact on patients’ priorities? Orthopaedic surgeons have a superficial understanding of

what patients want from their treatment and what their expectations are of these

interventions. Furthermore, we do not know how these factors influence their perception

of their outcomes, including satisfaction. Undoubtedly, parents’ concerns and desires

influence, if not direct, decision-making. Parents’ priorities may be distinct from those of

their children. We don’t know much about parental expectations either or whose

perspective matters most? Are patients’ and parents’ priorities concordant with

surgeons’ goals and expectations? Is the surgeon’s perspective indeed a good proxy for

the patient’s priorities and preferences, as suggested by Bunch et al (Bunch and

Chapman 1985)?

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2.8 Rationale for this Project: Why bother?

AIS is an appropriate and convenient model to study patient priorities and preferences.

The patients are old enough to articulate their concerns, wishes and expectations, yet

they are not old enough to make decisions completely independent of their parents. The

natural history of untreated scoliosis and long term outcomes of treatment are uncertain.

As discussed above, since an important goal of surgery is cosmesis and the surgical

treatment is not without some significant risks and adverse effects, the decision to

proceed with the operation in some surgeons’ minds is discretionary. Under these

circumstances of uncertainty, an understanding and consideration of patients’ priorities

and their preferences becomes all the more important. The knowledge of patients’

concerns, what they want, what they expect and how their priorities differ from their

parents’ might provide important insight into hitherto unknown patient preferences, which

in turn might influence decision making, guide the process of informed consent and

facilitate the evaluation of outcomes that matter most to patients. This may improve the

quality of care they receive and may contribute to increased patient satisfaction.

2.9 Aims of Thesis

The purpose of this thesis was to address the following specific aims:

1. Describe and compare patients’, parents’ and surgeons’ concerns about scoliosis, as

well as concerns about its surgical treatment;

2. Describe and compare patients’ and parents’ desires (wishes) of the surgical

treatment of scoliosis with the surgeons’ goals of treatment;

3. Describe and compare patients’, parents’ and surgeons’ expectations of desired and

undesirable outcomes of surgical treatment of scoliosis.

15

CHAPTER 3 Patient Priorities: Theoretical Perspectives

3.1 Changing Paradigms: The Evolution of Patient-Centred Care

The obligation to relieve or prevent human suffering remains the cornerstone of the

practice of medicine. The science of medicine, on the other hand, has traditionally

focused on treating disease based on pathological anatomy and abnormal physiology

(Virchov 1923). The “disease” is an anatomicopathologic entity that objectifies the

patient’s illness. This model has been invaluable in advancing medical science and

technology but often at the expense of a fuller understanding of illness in more human

terms of the patient’s experience (Feinstein 1983; Baron 1985). The fundamental goal

of medicine, which is to relieve (or prevent) suffering, is often taken for granted or,

sometimes, forgotten altogether. Suffering, which is a subjective experience, may or

may not respond to interventions directed toward pathologic processes, even when

these regimens are technically effective (Cassel 1982). The phenomenon of the “cure”

being worse than the disease is not uncommon.

The traditional medical model that emphasizes “disease” has gradually been replaced by

models of health that emphasize function and well being in the physical, mental, and

social dimensions, health promotion and disease prevention, and individual rights and

empowerment (Larson 1999; WHO 2001). The current paradigm of patient autonomy

and consumerism has led to the recognition of the importance of patients’ perspectives

in all stages of the medical encounter (Gerteis, Edgman-Levitan et al. 1993). The

emphasis on the ethical dimensions of health care has gained as much prominence as

rigorous biomedical science (Forrow, Wartman et al. 1988).

16

The impact of these changes has been felt in all aspects of modern medicine. The

paternalistic approach that once characterized the traditional physician-patient

relationship during a medical encounter is gradually transforming to one of increasing

patient participation (Brody 1980; Kassirer 1983; Deber 1994). The doctrine of informed

consent (Faden and Beauchamp 1986) and more recently the concepts of patient

preferences and shared decision-making (Charles, Gafni et al. 1997) are products of this

evolution. The growth of the outcomes research movement was fuelled by the need “to

sort out what works in medicine and to learn how to make clinical decisions that reflect

more truly the needs and wants of the individual patients” (Wennberg 1990). The

recognition of outcomes that are meaningful to patients, such as quality of life, function

and patient satisfaction, and the development of instruments to measure these

outcomes has been a consequence of this movement.

The principles of patient welfare and autonomy have become enshrined in the codes of

medical ethics (Childress 1989) and the new Charter for professional medical practice

(2002). According to this Charter, the three fundamental principles to guide the practice

of medicine are:

1. The principle of primacy of patient welfare, which is based on a dedication to serving

the interest of the patient.

2. The principle of patient autonomy, which recognizes that patients’ decisions about

their care must be paramount, as long as these decisions are in keeping with ethical

practice and do not lead to demands for inappropriate care. Physicians should have

respect for patient autonomy. They must be honest with their patients and empower

them to make informed decisions about their treatment.

3. The principle of social justice, which requires that the medical profession promote

justice in the health care system, including fair distribution of heath care resources.

17

3.2 Patient Priorities and Preferences

Consistent with the current paradigm of patient autonomy and consumerism, is the

growing body of research dealing with patient preferences (Kassirer 1994) and patients’

concerns, desires and expectations for medical care (Kravitz 1984; Kravitz 1996). The

term “patient preferences” refers to the values expressed by patients for particular health

states or outcomes, which influence their choice (preference) of treatment after

consideration of the risks and benefits associated with competing treatment options

(Bowling and Ebrahim 2001). Patient preferences are central to current models of

shared decision making by patient and physician. Shared decision making, which

involves informed choice, is believed to enhance the quality of health care and may also

be associated with better adherence to treatment and higher levels of patient satisfaction

(O'Connor, Rostom et al. 1999).

“Patient priorities” refers collectively to patients’ concerns about their health status (or

medical condition), their desires (wishes and perceived needs), and their expectations of

treatment and its outcomes. Patient preferences are influenced by their priorities

(Uhlmann, Inui et al. 1984; Kravitz 1996). Therefore, the elicitation of patient

preferences should include an exploration of the patient’s concerns, desires and

expectations to provide the appropriate context for these preferences. This process also

provides insight into individual patients’ priorities, which can ensure that clinical

decisions are made on the basis of properly informed choice.

Patient desires and expectations may play an important role in the formulation of patient

satisfaction (Thompson and Sunol 1995). One theory of patient satisfaction is that it is a

subjective judgment resulting from the appraisal by an individual of the extent to which

the care received has met that individual’s expectations and preferences (Brennan

18

1995). Patient satisfaction has been considered to be one of the key indicators of the

quality of care (Donabedian 1982). Although some doubt has been cast on whether

patient expectations and preferences are related to the final appraisal of patient

satisfaction (Carr-Hill 1992; Ross, Steward et al. 1993; Williams 1994), an

understanding of patients’ priorities and addressing these by alleviating their concerns,

fulfilling their wishes and meeting their expectations are desirable goals in themselves,

and remain fundamental to the practice of medicine (Cleary and McNeil 1988; Carr-Hill

1992).

3.3 The Importance of Patient Priorities

There are several reasons why the elicitation of patients’ priorities is important both in

general and when applied specifically to the management of idiopathic scoliosis.

Eliciting goals and expectations from patients is crucial for making clinical decisions in

which preferences play a role (Hornberger, Habraken et al. 1995; Mancuso, Altchek et

al. 2002). Rational choices of treatment depend on how patients view their predicament

and on their attitudes about risks and benefits of treatment. In the face of uncertainty

about the natural history for individual patients and of the long term outcomes of surgical

treatment, the indications for surgery for adolescent idiopathic scoliosis are somewhat

discretionary and therefore should incorporate patients’ (and parents’) concerns weighed

against the risks of the intervention. Patients concerns may focus on specific aspects of

their physical deformity. Different aspects of an individual patient’s deformity lend

themselves to particular interventions during surgery. Eliciting patients’ expectations,

therefore, creates opportunities for clinical negotiation (Lazare, Eisenthal et al. 1975).

These processes can shed light on unrealistic or erroneous expectations and can

provide the impetus for more effective patient education, which should be the basis for

informed consent. The elicitation of patient priorities also enhances patients’ active role

19

in the medical relationship, which has been shown to improve outcomes (Greenfield,

Kaplan et al. 1985). Although meeting patients’ expectations is believed to produce

greater satisfaction, the actual process of eliciting patients’ priorities during the shared

medical decision-making process may be more of an influential determinant of patient

satisfaction, than the fulfillment of patient wishes and expectations (Fitzpatrick and

Hopkins 1983). Higher satisfaction in turn is associated with benefits such as greater

adherence to therapy (Sherbourne, Sturm et al. 1999), less doctor shopping (Ware and

Davies 1983) and lower likelihood of being sued for malpractice (Hickson, Clayton et al.

1994).

Knowledge of patients’ priorities also has important implications for health research.

Incorporating the “lay” perspective, which includes patients’ input, provides insight that

can influence research priorities, identify problems relevant to patients, influence

research design and execution, and help with the interpretation, dissemination and

implementation of research findings (Entwistle, Renfrew et al. 1998). An understanding

of patients’ priorities is also important for the development of patient-based outcome

measures. Patient-based outcomes instruments will only be meaningful if the questions

asked of patients reflect what’s relevant and important to them (Amadio 1993). In a pilot

study, candidates for total hip arthroplasty were interviewed to identify their main

reasons for undergoing surgery. Of the 16 complaints identified, four of these were

noted to be absent from any of the six hip-rating scales in general use at the time

(Wright, Rudicel et al. 1994). This work led to the development of a new outcome

measure that incorporated the preferences of individual patients (Wright and Young

1997). Disease-specific measures of patient expectations have also been developed

(Mancuso, Sculco et al. 2001; Mancuso, Altchek et al. 2002). The role of patients’

expectations have been explored (as independent variables) in studies about the

20

determinants of patient satisfaction or quality of care (Uhlmann, Inui et al. 1984;

Thompson and Sunol 1995). For example, patient satisfaction following total hip

arthroplasty was affected by their expectations as well as by their outcome (Mancuso,

Salvati et al. 1997). Expectations can also be used as the dependent variable in studies

of how patients’ expectations develop. For instance, older patients, men, and those with

worse pre-operative functional status had greater pre-operative expectations of total hip

arthroplasty (Mancuso, Sculco et al. 2003).

From a policy perspective, understanding patients’ expectations is important for

measuring measurement of health care quality, delivery of health services, the costs of

care (Kravitz, Callahan et al. 1996). Misguided or unrealistic expectations may increase

health care utilization and costs while providing little net benefit (Woolf and Kamerow

1990).

3.4 Defining Expectations

Patient concerns, desires and expectations have been defined and conceptualized in

many different ways. Thompson and Sunol reviewed the literature from the disciplines

of psychology, sociology, social policy, health care, and marketing, and identified four

types of user expectations. Common to all is that expectations are beliefs, and

therefore, products of cognitive processes (Thompson and Sunol 1995).

1. Ideal expectations are those that users would like to happen and can be referred to

as aspirations, desires, wishes, wants or the preferred outcomes (Friedson 1961).

Patients derive these expectations based on their perception and evaluation of their

problem and seek care to realize certain goals. An adolescent with idiopathic

scoliosis may desire perfect symmetry and full flexibility of her back and seeks

treatment to accomplish these goals.

21

2. Practical or Predicted expectations, on the other hand, are what users believe will

happen, described as the realistic, or anticipated outcomes. These are influenced by

personal experience, knowledge of others’ experience and from other sources of

information such as the doctor or the media (Friedson 1961). The adolescent with

idiopathic scoliosis may anticipate improved symmetry, and some loss of flexibility of

her back following surgery.

3. Normative expectations are those that users believe ought to or should happen

based on what they believe they deserve and or on what is socially endorsed. The

adolescent with idiopathic scoliosis may have the expectation that following surgery

her back should be “normal”.

4. Unformed expectations occur when users are unable or unwilling to articulate their

expectations due to fear, anxiety, conformity to social norms, or lack of knowledge or

experience to formulate expectations (West 1976). This may be temporary

phenomenon, but quite common in the health care context.

In marketing research, customers have been shown to have two levels of expectations

(Parasuraman, Zeithaml et al. 1991). Desired expectations are defined in terms of

what “should be” and “can be” and correspond to the “normative” and “ideal” types of

expectations described above. Adequate expectations are defined as the minimal

acceptable outcome. The range between these two levels of expectation is called the

“zone of tolerance”. Researchers also distinguish expectations of outcomes from

expectations of process (Parasuraman, Zeithaml et al. 1991). Expectations are not

static but likely to change with accumulating experience (Locker and Dunt 1978). For

example, an adolescent with idiopathic scoliosis may articulate a desired expectation of

a perfectly symmetric back without visible scars following surgery, but may be willing to

accept a perfectly symmetric back with visible scars, as adequate. Such a narrow zone

22

of tolerance, with the expectation of perfect symmetry, maybe unrealistic. Based on

information provided by the surgeon or discussions with other patients who have

undergone surgery, the patient may lower her level of adequate expectations to

improved but not perfect symmetry, thereby expanding the zone of tolerance.

Thus, expectations have been variously used to represent an anticipation (looking

forward to something); a likelihood (the probability of a future event or occurrence); an

entitlement; a justification (reason or warrant for looking forward to something); or

something hoped or wished for (Kravitz 1996). Efforts have been made to standardize

the definitions of desires and expectations and to bring some clarity to our understanding

of these concepts (Uhlmann, Inui et al. 1984; Kravitz 1996). Based on a comprehensive

review of the bio-medical literature, Kravitz proposed that the following properties must

be considered while defining patient expectations (Kravitz 1996).

1. Definitional Orientation: Probabilities (expectancies) or Values

Expectations may be expressed as probabilities (expectancies), which refer to the

patient’s belief or perception about the likelihood of future clinical events or occurrences

(Uhlmann, Inui et al. 1984). The outcome may be desirable or not. For example,

patients undergoing instrumented spinal fusion surgery for idiopathic scoliosis may

perceive a high likelihood that their spinal deformity will be reduced following their

operation.

Alternatively, expectations can be expressed as values, which are attitudes reflecting a

patient’s valuation or perception that a given event is wanted (Uhlmann, Inui et al. 1984).

Value expectations can be expressions of desires (what is wanted or one’s ideal

expectations), necessity (what is perceived to be needed), entitlement (what is felt to

23

be owed), or normative standards (that which should be). Patient desires or wishes

can be explicitly communicated as requests (Uhlmann, Inui et al. 1984). They can also

be expressed in terms of importance. It is not known if inquiring about “importance’

results in different responses than asking about desires, needs or entitlements directly.

Events desired (wanted, wished or hoped for) may not be expected (perceived to be

likely) and vice versa. For example, patients undergoing instrumented spinal fusion for

idiopathic scoliosis may desire a completely normal looking back after their surgery but

may not expect such an outcome. In contrast, they may expect to experience pain in the

post-operative period and a scar, but not desire this.

Patient desires and expectations are products of concerns related to diagnostic,

prognostic and therapeutic issues. Patients can have biomedical concerns as well as

psychologic, social, administrative, and interactional concerns (Uhlmann, Inui et al.

1984; Kravitz 1996).

2. Level of Specificity: General or Specific Expectations

Patient expectations may be aimed at expectations for care in general, which include

factors such as continuity, comprehensiveness, availability, compassion, expertise,

coordination, cost, and convenience of care (Fletcher, O'Malley et al. 1983); or

expectations for specific aspects of care such as a specific medical encounter or

surgical procedure. Although general expectations have also been called goals,

priorities or role preferences in the literature, these terms apply just as well to

expectations for specific aspects of care including clinical outcomes.

24

3. Content of Expectations: Structures, Processes or Outcomes

Using the conceptual scheme for assessing health care quality developed by

Donabedian (Donabedian 1980), the content of expectations may focus on one or more

of these aspects. Health care structures refer to facilities, personnel (medical, nursing,

clerical, administrative), equipment, and organizational policies needed to provide good

health care. Processes of health care occur during the provision of care by physicians

and other health care providers, including judgments about technical processes (e.g.

history taking, physical examination, diagnostic testing, therapeutic procedures,

prescriptions, and referrals), and interpersonal processes (e.g. communications and

interactions between physicians and patients or between consulting physicians). Finally,

and probably most importantly, outcomes are the end results of care, including physical,

functional, psychosocial and financial outcomes, which can be measured in the short,

medium or long term.

Few studies of patients’ expectations have focused on structure possibly because of

the assumption that good structures produce good processes. Consequently, most

studies on patient expectations focus on processes of care. In a primary care clinic

setting, Good et al found that patient expectations (request categories) of the clinical

encounter most highly ranked were requests for test results, explanation, symptomatic

treatment, medical advice, and provision of a diagnosis (Good, Good et al. 1983). The

validated Patient Request for Services schedule (Like and Zyzanski 1986) categorizes

patient expectations (requests) in the following five dimensions: medical information;

psychosocial assistance; therapeutic listening; general health advice; and biomedical

treatment. When tested in a family practice setting, request fulfillment explained 19% of

variance in patient satisfaction (Like and Zyzanski 1987).

25

Despite evidence that suggests patients evaluate processes partly in terms of the

outcomes they produce (Kravitz, Cope et al. 1994), there has been relatively little

attention focused on expectations of outcomes, with some exceptions (Noyes, Levy et

al. 1974; Woolley, Kane et al. 1978; Davis, Albino et al. 1986; Uhlmann, Inui et al. 1988).

Kravitz speculates that “this may be because individual physicians have a great deal of

control over processes but little over outcomes” (Kravitz 1996). In the field of

orthopaedics, patient expectations in relation to outcomes have been explored primarily

in the total hip replacement literature (Burton, Wright et al. 1979; Haworth, Hopkins et al.

1981; Wright, Rudicel et al. 1994; Mancuso, Salvati et al. 1997), hip fractures

(Furstenberg 1986); knee replacement and knee surgery (Mancuso, Sculco et al. 2001);

shoulder surgery (Mancuso, Altchek et al. 2002); foot surgery (Bellacosa and Pollak

1993) and surgery for spinal stenosis (Iversen, Daltroy et al. 1998).

3.5 Expectations & Satisfaction: Theory of Expectancy Disconfirmation

Several theories have been proposed to explain the relationship between expectations

and patient satisfaction, mostly falling under the rubric of the Expectancy

Disconfirmation theory of Zegers. Under the disconfirmation paradigm, satisfaction is

the result of a comparison between prior expectations and perceived occurrences

(Zegers 1968). This theory assumes that individuals have preformed expectations, and

are able and willing to judge the quality of outcomes. According to this model,

satisfaction increases with the level of perceived performance or outcome, and the

magnitude of the individual’s prior expectations. If performance exceeds expectations

(i.e., there is positive disconfirmation), an increase in satisfaction is likely, whereas if

performance falls short of one’s expectations (i.e., if there is negative disconfirmation), a

decrease in satisfaction is likely (Yi 1990). Dissatisfaction is increased by a disparity

between a standard (expectancies, values, norms) and the perceived occurrences

26

(outcomes). The theory of expectancy disconfirmation has been a dominant theme in

the satisfaction literature of many fields.

In their studies on job satisfaction, social psychologists Fishbein and Ajzen describe

satisfaction or dissatisfaction as expressions of attitude, which reflect one’s evaluations

or affective responses towards the subject of interest (Fishbein and Ajzen 1975).

Expectations are beliefs, which are products of a cognitive process. The relation

between attitudes and beliefs can be explained by the Expectancy-Value theory, which

describes expectations as beliefs that a given response will be followed by some event,

which produces either a positive or negative valence or affective orientation to the event

or outcome (Fishbein and Ajzen 1975).

Lawler has reviewed the literature on satisfaction with pay, in which he identified and

categorized other theories of satisfaction based on how satisfaction was measured in

these studies (Lawler 1971). Discrepancy theory defines satisfaction as a result of the

difference between what is desired (or expected, or perceived to be needed) and what is

experienced (perceived to occur), as a proportion of those desires (expectations or

needs). This model takes into account the amount desired or expected in the first place.

Fulfillment theory, in contrast, defines satisfaction as the simple difference between

outcomes desired (expected or needed) and perceived occurrences. Finally, Equity

theory proposes that satisfaction is a result of perceived balance of inputs and outputs

evaluated in comparison to others’ balances. Satisfaction occurs when one perceives

one’s share of resources is fair in relation to what others receive, adjusted according to

agreed-on rules or norms.

27

In the social sciences, the Relative Deprivation theory posits that when one receives

less than what one wants one feels a sense of deprivation; when one receives less than

one expects one feels disappointment; and one receives less than what one is entitled to

(based on social rules and values), one feels a sense of injustice (Williams 1975).

In the marketing literature, there are several models of customer satisfaction that are

also based on the theory of expectancy disconfirmation. The Cognition-Affect Model is

a composite model of satisfaction (Oliver 1993) linking attribute performance (perceived

occurrences) and prior expectations indirectly with satisfaction through a process of

disconfirmation. In this pathway, positive evaluations are derived by comparing

perceived occurrences with a set of internal standards. The model also incorporates the

empirical observation that attribute performance and expectations affect evaluations of

satisfaction directly. Higher expectations (regardless of performance) and excellent

performance (regardless of expectations) lead to positive evaluations. The model also

takes into account the influence of affect domains (positive or negative attitudes) as an

intermediary between attribute performance (outcome) and satisfaction. Equity or

inequity is also a distinct contributor to satisfaction.

Anderson proposed the Assimilation-Contrast Model of Perceptions (Anderson 1973)

which provides a more empirically supported explanation for why when using the

disconfirmation paradigm, there is little variance in measures of satisfaction, except

under extreme circumstances. Based on Festinger’s Theory of Cognitive Dissonance

(Festinger 1957), an assimilation effect occurs when perceptions of performance differ

only slightly from expectations. This is because disconfirmed expectations tend to cause

psychological discomfort. Any discrepancy between expectation and performance will

be minimized or assimilated by the consumer adjusting the perceptions of the product to

28

be more consistent with expectations. Perceived satisfaction can be high despite

disconfirmed expectations. However, when there is a large discrepancy between

perceived performance and prior expectations, there is a tendency to exaggerate the

difference, called a contrast effect.

The Zone of Tolerance Model incorporates a range between “adequate” and “desired”

levels of service expectations called the “zone of tolerance” (Parasuraman, Zeithaml et

al. 1991). The zone expands or contracts and falls or rises depending on the individual

and the context. Zone of tolerance is higher and narrower for more important

dimensions of expectations. Adequate expectation levels are more apt to change than

desired level, and are influenced by specific circumstances. Desired level may also

change based on past experience or based on new information.

In the context of health care, Thompson and Sunol proposed a composite model of

patient satisfaction that combines Anderson’s Assimilation-contrast model and

Parasuraman’s Zone of tolerance model from marketing research to be used for any

future empirical study of the disconfirmation paradigm (Thompson and Sunol 1995).

This model substitutes Anderson’s “objective” performance with subjective perceived

performance (outcome) because expectations and satisfaction are more likely to relate

to these subjective criteria rather than any objective measures per se. Models need to

account for contribution of affective states, which may be possibly of greater importance

than some cognitive evaluations in what could be a highly emotional or extraordinary

experience. Disconfirmed expectancies can lead to non-linear patterns of satisfaction.

Expectations can also be distinguished into expectations of structure, process and

outcome components (Thompson and Sunol 1995).

29

Linder-Pelz formulated five separate hypotheses, derived from the original Fishbein &

Ajzen theory, the Discrepancy theory, and Fulfillment theory and its variants, and tested

these to determine how expectancy (perception) value interactions influence patient

satisfaction (Linder-Pelz 1982; Linder-Pelz 1982). This study was conducted in the

setting of out-patient primary care clinic studying first time patients and their experience

with their medical encounter. Prior expectations, values and perceived occurrences had

independent effects on patient satisfaction with the clinic visit, but together these

accounted for less than 10% of the variation in patient satisfaction. Prior expectations,

independent of other variables, consistently had the most significant effect on

satisfaction (2 of 3 satisfaction scales), but explained no more than 8% of the variance in

satisfaction ratings. This work would suggest that patients’ background beliefs (prior

expectations) play a more significant role in determining their satisfaction with care than

their perceptions of the care received. There was no support for Fishbein & Ajzen’s

theory, as the interaction of values and expectations was unrelated to satisfaction.

There was no support for Fulfillment model either. There was some support for the

Discrepancy model. Linder-Pelz found that satisfaction was inversely related with

discrepancy: the better the perceived occurrence in relation to prior expectation, the

more the satisfaction. Satisfaction was greater among patients with both favourable

expectations and favourable occurrences than among patients with favourable

expectations but negative occurrences, and least among those with both negative

expectations and negative occurrences (Linder-Pelz 1982).

Linder-Pelz considered only three dimensions of care (doctor conduct, general

satisfaction, and convenience), which pertain more to process than outcomes. The

measures of expectations and values were often single-item measures, which did not

always match in content with satisfaction item used as counterparts. Nevertheless, this

30

work highlights the importance of patients’ prior expectations in determining their

satisfaction with care, and therefore, prior expectations should be taken into

consideration in any exploration of patient satisfaction (Linder-Pelz 1982).

3.6 Issues in Measuring Patient Priorities

No ideal method for measuring patient priorities has been established. Researchers

have used a variety of qualitative and quantitative techniques to measure expectations

and their relationship with satisfaction (Ross, Frommelt et al. 1987). Scholars have

recommended the need for qualitative studies to explore how patients conceptualize and

articulate their concerns, desires and expectations as a necessary precursor of

quantitative studies (Thompson and Sunol 1995). Patients’ perspectives should be used

to develop questionnaires specifically to measure expectations in healthcare, because

patients can best articulate what they should be asked based on what is salient from

their experiences rather than leaving this up to the researcher (Aharony and Strasser

1993).

Kravitz describes what factors to consider when patient expectations are measured

(Kravitz 1996). He also emphasizes the importance of the timing of the assessment of

expectations. Typically, an expectation is formed prior to an encounter (or intervention).

Expectations may be modified during the encounter, and referenced after the encounter

for the purpose of making an overall judgment about the encounter and therefore

satisfaction. Expectations can therefore be examined either before and/or after the

intervention. How much before or after the encounter is also important. Although pre-

treatment expectations are independent of, and uncontaminated by, subsequent events,

they may be less relevant than expectations that are formed (or persist) during or after

the intervention (Kravitz 1996). Brody has shown poor to modest correlations between

31

pre- and post visit desires of patients visiting a hospital outpatient clinic (Brody, Miller et

al. 1989). It is unclear whether this discordance can be attributed to a true change in

expectations or a change in the patients’ reporting of their expectations. Longitudinal

studies are necessary to establish how patient priorities emerge and are modified during

the process of care (Thompson and Sunol 1995).

Kravitz recommends that the scope of the measurement must also be considered when

formulating a survey about expectations (Kravitz 1996). This is reflected in the breadth

of questions asked. Questions or items in a survey can pertain to broad categories of

care, or correspond to specific interventions. The latter may result in a long list of items

and a larger respondent burden. However, specific items are more likely to demonstrate

a link between expectation fulfillment and satisfaction (Kravitz, Cope et al. 1994). The

questions can be closed or open-ended (Uhlmann, Inui et al. 1988).

Ideally the use of mixed methods to measure the same phenomenon such as the

concurrent use of self administered surveys, personal interviews, surveys or interviews

of family members, participant observation, etc. will help triangulate the measurement

(Arnould and Price 1993). In the context of paediatric medical care, most studies of

satisfaction are based on parents’ perception of their own experience or their perception

of their child’s experience rather than the child’s perceptions of care. It is important to

recognize these as proxy responses and to measure the children’s perception whenever

possible (Aharony and Strasser 1993). The relationship between expectations and

satisfaction should be explored in a variety of health care contexts as findings derived in

one clinical setting are not necessarily generalizable to other clinical settings. The

relationship of satisfaction with actual and perceived patient outcomes also deserves

further study (Aharony and Strasser 1993).

32

Patient expectations may also be influenced by personality, previous experience, social

and cultural values, and the particular context in which care is received (Cleary and

McNeil 1988). Kravitz recognized the lack of a conceptual model linking patients’

expectations to their cultural and social-psychological antecedents, and to their

cognitive, affective, and behavioral consequences. He proposed a framework modeled

around patient satisfaction in order to promote improved clinical care and research

incorporating these concepts (Kravitz 1996). In this model a patient has initial

expectations which are formed prior to an encounter or intervention, but may be

modifiable as the encounter proceeds. These initial expectations may be well formed or

amorphous, and factors such as sociodemographic characteristics, prior experiences, or

specific biopsychosocial concerns may be important determinants of these expectations.

During the medical encounter or intervention the patient perceives the outcome. The

perception of the encounter may be based on the actual occurrences filtered through the

patient’s neurosensory and psychological apparatus. The patient’s evaluation of the

outcome begins during and after the encounter and involves a comparative process

where perceived occurrences are contrasted with expectancies (beliefs about the

probability of an occurrence) and to values (attitudes toward potential occurrences).

This evaluation may also be affected by age, ethnicity, and health status and gender

(Hall, Irish et al. 1994).

3.7 New Conceptual Framework

Using the literature linking patient expectations with satisfaction, the model proposed by

Kravitz was adapted to construct a new conceptual framework, which could be applied to

the context of adolescents undergoing surgery for idiopathic scoliosis (Figure 1). In this

model the patient’s priorities (concerns, desires and expectations) are linked to one’s

33

experience of living with the condition (symptoms); to one’s beliefs about the natural

history of the condition (diagnosis and prognosis); as well as beliefs about the treatment

and its consequences (actual and perceived outcomes). In content, this model is

focused on the outcomes of health care and not with structures or processes of health

care (Donabedian 1988).

There is some empiric evidence that the main content of patient expectations are

derived from ideas about the presenting illness and the concerns that arise about these

(Fitzpatrick and Hopkins 1983). The typical presentation of adolescent onset idiopathic

scoliosis is seldom associated with any symptoms. The presenting “complaint” is usually

an observed asymmetry of the back that is either picked up by a family member or

friend, or by a screening examination done by a family doctor or at school. The

subsequent referral to a specialist will establish the diagnosis of scoliosis based on the

physical examination and radiographs. This medical encounter will typically involve

some discussion about the diagnosis and its natural history or prognosis, which also

contributes to the patient’s accumulation of concerns and expectations over and above

those from ideas about the current illness (Fitzpatrick and Hopkins 1983). There follows

a discussion of treatment options and recommendations prior to some decision being

made. These steps may occur over several encounters or periodic outpatient visits.

At the outset the patient may develop a set of concerns initially in response to

perception of the presenting illness. These concerns may not be well formed until after

the diagnosis has been established and some discussion about the implications of

idiopathic scoliosis has occurred with the specialist. Concerns are the product of the

patient’s personal beliefs (cognitive component) as well as emotional orientation

(affective component) (Fitzpatrick and Hopkins 1983). Concerns can be influenced by

34

personal experience and information gleaned from a variety of sources besides the

patient’s doctor, such as books and magazines, and the internet; or knowledge of others

experiences. These sources may provide variable and conflicting information, all of

which can shape the patient’s perception of the natural history or prognosis. In a study

of patients presenting with headaches to a neurology out-patient clinic, Fitzpatrick and

Hopkins have shown patients to demonstrate three types of concerns: concern for

reassurance; concern for relief of symptoms; concern for preventative intervention

(Fitzpatrick and Hopkins 1983). These types of concerns may generically apply to

adolescents with idiopathic scoliosis as well. The actual concerns may be about

problems experienced in the present or potential future problems that are believed to be

potential future consequences scoliosis. There are separate set of concerns related to

the treatment (bracing or surgery) of scoliosis and its potential side effects or

complications.

These biopsychosocial concerns, some of which might be unfounded, are likely to be

major motivating influence in the formulation of the patient’s initial desires and

expectations. In this model, patient desires are expectations as values (Kravitz 1996),

which reflect a patient’s perception that a given event is wanted. These can be

expressed as what the patient wants (or wishes) from treatment of their scoliosis, or

what the patient feels she needs to address her concerns about the consequences of

scoliosis. These desires are akin to the ideal expectations (Friedson 1961) or desired

expectations of the zone of tolerance model (Parasuraman, Zeithaml et al. 1991).

Patient’s may (or may not) be aware that these desires are unrealistic and be able to

express their expectations as probabilities or the likelihood that a given event will occur

following treatment (Kravitz 1996). These expectations are consistent with the predicted

35

or anticipated outcomes (Friedson 1961). If expressed as the minimal acceptable

expectation, this would be consistent with the adequate outcomes of the “zone of

tolerance” model (Parasuraman, Zeithaml et al. 1991). These expectations of treatment

can apply to desired as well as undesirable events or outcomes.

Like patients’ concerns, patients’ desires and expectations are also likely to evolve over

time. Indeed in idiopathic scoliosis, the spinal deformity is usually treated only if the

deformity is quite large or has been shown to be progressive. When the deformity

reaches some threshold, treatment is recommended based on the treating doctor’s

perception of the natural history of that deformity. During the process of informed

consent, the objectives of the treatment are described, and alternative strategies to

accomplish these objectives discussed along with the potential risks and complications.

In this era of shared decision making, this process must take the patient’s priorities into

consideration, so that the objectives of the treatment chosen may be consistent with the

desires and expectations of the patient. When these are divergent an alternative

treatment option (if it exists) may be offered. Therefore, patients’ expectations may

modify what a physician does via requests, which are expressions of patients’ wishes.

When these are unrealistic or poorly formed, the doctor’s responsibility is to educate the

patient so that she has the opportunity to “recalibrate” her priorities. Therefore, the

doctor-patient negotiation during a clinic visit can also influence patients’ concerns,

desires and expectations. Ideally, treatment should only occur when there is a

convergence of patient priorities and treatment objectives.

The effects of treatment are called the outcomes. Some of these are easily measurable

and others less so. The outcome experienced by the patient is the perceived outcome,

which is influenced by the actual outcome, but also coloured by the positive or negative

36

disconfirmation of the patient’s expectations. Actual occurrences can influence

expectations, either directly or by altering patients’ perceptions (Kravitz 1996). The

evaluation of the perceived outcome can be expressed as satisfaction. The magnitude

of satisfaction is determined by many factors including the actual outcome contributing to

satisfaction directly or indirectly through the patient’s perceived outcome. The perceived

outcome is compared with patient’s prior concerns, desires and expectations.

Presumably, the magnitude of patient satisfaction is also determined by whether the

patient got what she wanted and or expected, avoided undesirable events, and had her

concerns alleviated. This is consistent with the rationale for the intervention in the first

place, which is to alter favorably some or all aspects of the natural history of that

condition, doing the least harm possible.

This model assumes that patients (adolescents) do indeed have concerns, desires and

expectations, and are able to articulate them. However not all patients may have well

formed priorities. Even if they do, they may not be willing to share some or all of their

concerns, desires and expectations. Although the patients are old enough to articulate

their priorities, decisions regarding treatment are not made independently of their

parents. The parents’ concerns, desires and expectations must also be considered, and

these may be quite distinct from those of their child.

37

Figure 3.1 NEW CONCEPTUAL FRAMEWORK

The model is time ordered with past events represented at the top. The left half of the model, shaded in red, represents the patient’s perspectives including the patient’s priorities, perceived outcomes and satisfaction.

PRESENTATION Symptoms Experience

Observed deformity

DIAGNOSIS

NATURAL HISTORY or PROGNOSIS

CONCERNS • Present • Future • Treatment related TREATMENT OPTIONS

• Observation • Orthosis (brace) • Operation

DESIRES • Wishes • Needs

EXPECTATIONS • Desirable • Undesirable

TREATMENT

OUTCOMES • Reduced deformity • Reduced future risks

PERCEIVED OUTCOMES

PATIENT SATISFACTION WITH OUTCOME

N E G O T I A T I O N

REFERRAL

38

3.8 Summary

With the recognition that patient satisfaction is one of the key indicators of the quality of

care received, there is an increasing emphasis on understanding the antecedents of

satisfaction, of which patient expectations are believed to be the dominant factors.

Patient expectations primarily reflect an expectancy or perception that a given event is

likely to occur, whereas patient desires are wishes regarding medical care and primarily

reflect a value or perception that a given event is wanted (Uhlmann, Inui et al. 1984;

Kravitz 1996). Patient desires and expectations are products of biopsychosocial

concerns related to diagnostic, prognostic and therapeutic issues (Uhlmann, Inui et al.

1984; Kravitz 1996). Collectively, patient concerns, desires and expectations can be

called patient priorities. An understanding of the patient’s priorities is important for

many reasons, including making clinical decisions in medical conditions in which

preferences play a role. The alleviation of patient’s concerns, fulfilling their wishes and

meeting their expectations remain fundamental goals in the practice of medicine.

In the health care context, patient priorities can focus on general or specific aspects of

the structures, processes or outcomes of medical care. Patient priorities are products of

a dynamic interaction, emerging, evolving and even changing over time in response to

accumulating experience (Locker and Dunt 1978; Thompson and Sunol 1995). Patient

desires and expectations are presumed to interact with perceived occurrences to

produce evaluations of care, which may be expressed as some measure of satisfaction.

This interaction is believed to occur implicitly through some process of expectancy

(dis)confirmation, where disconfirmation is the extent to which expectations are not met.

Numerous theories have been proposed to explain this complex relationship in the areas

of job satisfaction, marketing, psychology, sociology and heath care. In general,

39

expectations have been shown to account for only a small amount of variance in patient

reports of satisfaction. However, there has been little consistency in the way patient

expectations have been studied or in their correlations with expectations. Expectation

categories derived in one clinical setting are not necessarily generalizable to other

clinical settings.

The model proposed by Kravitz was adapted to develop a new conceptual framework

that incorporates the empirically supported findings (or hypothesized relationships) of the

many theories pertaining to the formulation of patient satisfaction. This framework

served as the foundation for the conduct of this research.

40

CHAPTER 4

Measurement of Concerns, Desires and Expectations

4.1 Introduction

The research project was conducted in three stages. The first phase involved the review

and synthesis of the literature followed by the development of an instrument to measure

patient priorities pertaining to surgery for idiopathic scoliosis. The second stage involved

the recruitment of patients and parents for the completion of the surveys and subsequent

structured interviews. In the third stage, patients’ surgeons were surveyed followed by a

national survey of all surgeons involved in the management of adolescent spine

deformity in Canada.

This chapter describes the development of the questionnaires that were used to

measure the concerns, desires and expectations of adolescents undergoing surgery for

correction of their idiopathic scoliosis. A qualitative approach was used to construct

patient, parent and surgeon version of the questionnaire. The questionnaires were pilot

tested prior to their use separately for patients, their parents and their surgeons.

4.2 Development of Questionnaire

Development of the questionnaire was informed by the review of the literature, described

in Chapter 2, about priorities pertinent to adolescent onset idiopathic scoliosis. The

literature on patient priorities, including the concepts of concerns, desires, expectations

and patient satisfaction, was reviewed and reported in Chapter 3. Various theoretical

perspectives and conceptual models were examined to assess their applicability to

adolescent idiopathic scoliosis. Recommendations based on empirical evidence were

sought to support an appropriate framework to measure these concepts (Linder-Pelz

1982; Uhlmann, Inui et al. 1984; Thompson and Sunol 1995; Kravitz 1996). Conceptual

41

definitions were derived from the new framework. The questionnaire was developed

specifically to measure patients’ concerns about current and future problems of scoliosis,

concerns about the surgical treatment, their desires or wishes of treatment, and their

expectations of desired and undesirable outcomes of treatment.

Following the recommendations of Uhlmann (Uhlmann, Inui et al. 1984), the

questionnaire was developed qualitatively using an adaptation of the negotiated

approach to patienthood (Lazare and Eisenthal 1979). Previously called the

“customer approach to patienthood”, this method involves a semistructured patient

interview primarily for the elicitation of patient requests (Lazare, Eisenthal et al. 1975).

Designed to complement the traditional biomedical approach to making a diagnosis and

providing treatment, this approach employs an interview based on the standard history

of present illness interview, but specifically asks patients to identify problems for which

they seek care, identify desired outcomes and desired methods to achieve those

outcomes (Eisenthal, Emery et al. 1979).

Ethical approval was obtained from the Research Ethics Board at The Hospital for Sick

Children, to conduct patient and parent interviews for the purpose of item generation.

Eligible participants were drawn from a purposeful sample of patients with adolescent

onset idiopathic scoliosis who were candidates for, and had been offered/recommended,

surgery for their scoliosis, as well as the parents of these patients. Following their

diagnosis, these patients had undergone a period of observation or brace treatment up

until the time of the interview. This ranged from 6 months to 3 years. Since the

diagnosis was not new, it was felt that the patient’s current knowledge/understanding of

the diagnosis and its implications would have evolved to the point that she/he was likely

to have developed a set of concerns, desires and expectations pertaining to the

condition and proposed treatment. The purpose of these initial interviews was to

42

encourage patients and their parents to articulate these issues, so that they could be

further explored and documented. Written consent was obtained from patients and their

parents to participate in the interviews.

Initial interviews were open-ended discussions with patients (and their parents) that

focused on all their concerns, worries, wishes, hopes, needs, desires, and expectations

pertinent to their diagnosis of idiopathic scoliosis and its treatment. Interviews were

audio-tape recorded. Each interview was transcribed and immediately analyzed.

Common themes were sought and specific items identified. Additional items were

derived by surveying a group of paediatric orthopaedic surgeons, experienced in the

management of idiopathic scoliosis. Items were separated into sections for concerns

about the diagnosis; concerns about the treatment; desires, wishes and perceived goals

of the treatment; expectations of treatment in terms of probabilities or likelihood of

events (outcomes) good and bad following surgery, and the minimal acceptable outcome

that would satisfy the patient (or parent). In each of these sections, items were

organized according to whether these were current and/or future priorities, and

according to different domains, such as physical appearance, pain, physical function,

social function, issues of self esteem and emotion, and issues of health. Additional

patients and their parent/s were interviewed until saturation was achieved. Saturation

was assumed when no additional items emerged following three consecutive interviews.

After the initial open-ended interviews, subsequent interviews were semi-structured with

a pre-defined set of open-ended questions as well as a list of questions/items with

scaled response options. A questionnaire was developed with ordinal rating scales for

each of the items. This was an iterative process with the questionnaire being modified in

response to feedback from the interviewees to ensure simplicity and comprehension.

43

Each successive interview was used to revise the questionnaire. A total of eight sets of

patients and their parents were interviewed to develop the final draft of the

questionnaire. The questionnaire was examined by the paediatric orthopaedic surgeons

for face and content validity. The final questionnaire was pilot tested on 11 additional

patients (and their parents), either prior to their scheduled surgery or after they had

already undergone surgery. All interviews were conducted by the principal investigator.

4.3 The Patient Questionnaire (Appendix A)

The final questionnaire included eight sections.

4.3.1 Section I

Section I was entitled “Patient’s concerns regarding scoliosis”. The purpose of this

section was to determine what concerns or worries each patient had with regards to

her/his diagnosis of adolescent idiopathic scoliosis (the illness). This section included 21

items encompassing 5 different domains (number of items): physical appearance (3),

pain (2), physical function (4), psychosocial: social function, emotion/self esteem (8), and

health (4). In addition, the respondent could add up to two additional items to the

provided list. Eight of the 21 items could be categorized as concerns pertaining to the

patient’s “present” experience (at the time), while the remaining 13 items pertained to

potential “future” problems. For example the two items on concerns about physical

appearance are focused on “physical appearance at the time” or “physical appearance in

the future” respectively. The patient was asked to rate the magnitude of concern that the

patient experienced with regards to each of the listed items using a 6-point ordinal rating

scale ranging from “Not at all concerned” (0) to “Extremely concerned” (5). Since this

survey was designed for patients who had completed their surgery, we were interested

in determining the patients’ concerns prior to surgery. Section IA refers to the patient’s

previous concerns, which are the patient’s concerns about scoliosis experienced

44

before surgery. Since this evaluation required recalling experiences from 2 years

previously, patients had the option of choosing “Don’t remember”, which was treated as

0 for the analysis. Section IB refers to the patient’s present concerns, which captures

the patient’s current or residual concerns about their diagnosis two years after her/his

surgery.

4.3.2 Section II

Section II attempts to quantify each patient’s experience of living with scoliosis, akin to

the presenting complaints or symptoms one might associate with one’s condition

(Section II; Appendix 3). This section only includes the eight (out of 21) items that

pertain to experiences at the time and not to potential experiences of the future. The

respondent could include up to two additional items to the list. The item on physical

appearance was expanded to include seven specific aspects of the physical appearance

that patients reported were of importance to them during the initial interviews. For each

of the items listed, the patient was asked to rate the perceived magnitude of the problem

due to scoliosis that the patient experienced using a 6-point ordinal rating scale ranging

from “Not a problem” (0) to “Very severe” (5). Section IIA refers to the patient’s

previous problems, which are the problems they experienced before surgery. Since

this evaluation required recall, patients had the option of choosing “Don’t remember”,

which was treated as 0 for the analysis. Section IIB refers to the patient’s present

problems, which quantifies the patient’s current or residual problems two years after

her/his surgery. These correspond to patients’ perceived outcomes in these domains.

4.3.3 Section III

Section III captures each patient’s perception of the likelihood of future problems as a

result of her/his scoliosis. This section includes the thirteen items (out of 21) that pertain

45

to potential future issues that some patients believe might be problematic. Respondents

could include up to two additional items of their choice. In Section IIIA, patients were

asked to recall what they thought the likelihood of each of the items was before their

surgery. These items were rated on an 8-point ordinal rating scale ranging from

“Extremely unlikely” (1) to “Extremely likely’ (7). The item was rated 0, if the patient

believed this was “Not a problem” or reported “Don’t know”. This section assesses

patients’ perception of the natural history of their condition. In Section IIIB, patients were

asked to rate their current perception of the future likelihood of the same thirteen items

as a result of their surgery. The purpose of this section was to capture patients’

perception of whether the natural history of their scoliosis had been altered by their

surgery, and also captures patients’ perceived outcomes pertaining to the preventative

aspects of the operation.

4.3.4 Section IV

Section IV of the questionnaire measures what each patient wants from treatment or

their reasons for having surgery. These correspond to patients’ ideal expectations or

their preferred outcomes (Friedson 1961). These value expectations are attitudes

reflecting a patient’s perception that a given event is wanted (Uhlmann, Inui et al. 1984;

Kravitz 1996), and are expressed as wishes or hopes regarding medical care. For this

study, patient desires were operationalized in two ways. First, in Section IVA, the patient

was asked to report how much one hoped, wished or desired that the treatment

(surgery) would accomplish each of 21 different objectives or goals (plus 2 additional

objectives of her/his choice). The strength of this desire was rated on a 6-point ordinal

rating scale from “Not at all desired” (0) to “Very strongly desired” (5). Once again, since

the questionnaire was relying on patient recall of desires prior to having surgery, the

patient was given the option of an additional response “Don’t remember”, which was

46

treated as 0 for the analyses. Secondly, in Section IVB respondents were asked to rank

their wishes or desires in order of “most to least important reason” for undergoing

surgery, from the list of 21 objectives. Respondents were asked to limit their ranking to

their top 10 wishes.

4.3.5 Section V

Section V of the questionnaire measures patient expectations of surgery for scoliosis.

This study focuses on specific rather than generic expectations, and is limited to

expectations for outcomes rather than with processes or structures of medical care

(Kravitz 1996). In this study the measurement of patient expectations were

operationalized in two ways. First, in Section VA, expectations are defined as the

subjective estimation of the likelihood that a given event or outcome will occur. These

predictive expectations are therefore expressed as an expectancy or probability

rather than a value, and represent a belief strength (Uhlmann, Inui et al. 1984;

Thompson and Sunol 1995; Kravitz 1996). Patients were asked to report their

estimation of the likelihood that surgery would accomplish each of the listed 21 goals.

The likelihood of such an event occurring was rated on an 8-point ordinal rating scale

ranging from “Never: 0%” (0) to “Extremely likely: >95%” (7). Secondly, in Section VB

patients were asked to report the minimum acceptable outcome for each of the 21 goals

listed, that would be necessary for the patient to be satisfied, using an ordinal rating

scale ranging from “No change” (0) to “Very large (improvement or reduction of future

risk)” (5). This corresponds to the concept of adequate expectations (Parasuraman,

Zeithaml et al. 1991), and is being expressed here as a value expectation (Uhlmann,

Inui et al. 1984; Kravitz 1996).

47

4.3.6 Section VI

The outcomes of treatment can include events that are desirable (goals of the

intervention) as well as those that are undesirable (side effects and adverse events of

the intervention). The latter are dealt with in Section VI. In Section VIA, patients’

concerns are explored further but are focused on their concerns regarding the

surgical treatment of scoliosis rather than the diagnosis itself. Based on the initial

interviews, 24 different concerns were raised, which included some of the inevitable

unpleasant post-operative experiences as well as potential side effects, risks and

complications. Eleven of these issues could be categorized as short term problems,

while the remaining thirteen items had implications for the long term, arbitrarily defined

as one year after surgery to the rest of one’s life. The magnitude of concern for each of

these items was rated on a 6-point ordinal rating scale ranging from “Not at all

concerned” (0) to “Extremely concerned” (5). Respondents also had a “Don’t remember”

option that was scored 0 for the analyses. The level of concern regarding an adverse

event does not necessarily correlate with the perceived likelihood of the event. For

example some patients may be somewhat concerned about post-operative pain because

they may perceive that post-operative pain is extremely likely. However, they may be

extremely concerned about the risk of paralysis, even though they perceive this risk to

be extremely unlikely. Section VIB measured the respondent’s expectations of

undesirable outcomes. Patients were asked to provide their estimation of the

likelihood of these undesirable events on an 8-point ordinal scale ranging from

“Extremely unlikely: <1%” (1) to “Extremely likely: >95%” (7). Ratings of “Not a concern”

or “Don’t remember” are scored 0 for the analyses.

It is important to note that patients were being asked to recall their pre-operative or prior

concerns, desires and expectations at a point in time long after (2 years) the intervention

48

had occurred. Hindsight expectations are consistently biased in the direction of

perceived occurrence or outcome (Christensen-Szalanski and Willham 1991).

Nonetheless, it has also been shown that hindsight, rather than foresight expectations

(i.e., expectations formed prior to surgery) are the more potent determinant of

satisfaction since at the time of assessing satisfaction, the unbiased foresight

expectations are no longer available to the patient (Zwick, Pieters et al. 1995).

4.3.7 Section VII

Section VII measures the perceived outcomes from the respondent’s perspective. In

Section VIIA, patients were asked to report the magnitude of change experienced for

each of the 21 objectives, following surgery. For the eight items dealing with problems

or experiences at the time of surgery, patients were asked to rate magnitude of change

experienced on a 7-point ordinal rating scale ranging from “much worse” (-3) to “much

better” (+3), anchored around the middle of the scale at “no change” (0). For the thirteen

items dealing with potential future problems or risks, patients were asked to rate the

perceived change in the likelihood of risk for each of the items following surgery. The 7-

point ordinal scale was anchored by “increased risk severely” (-3) to “reduced risk

completely” (+3) with “no change in risk” (0) in the middle.

In order to create a more sensitive and comprehensive measure of satisfaction, Locker

and Dunt recommended measuring satisfaction with specific aspects of patient’s care

following prior identification of the patient’s priorities (Locker and Dunt 1978). In Section

VIIB, patients were asked to report their level of satisfaction with the results

associated specifically with each of the 21 items, using a 7-point ordinal scale ranging

49

from “extremely dissatisfied” (-3) to “extremely satisfied” (+3), around the midpoint of

“neither dissatisfied nor satisfied” (0).

Each of the Sections I to VII was specifically aimed at measuring the corresponding

elements of the framework in Chapter 3: the patient’s problems; perception of the natural

history, concerns, desires, expectations, perceived outcomes and satisfaction. (See

Figure 2)

4.3.8 Section VIII

Finally, Section VIII was an open-ended section that allowed respondents to report any

surprises following surgery. The purpose of this section was to document unexpected

events (good or bad) experienced by patients (Nelson and Larson 1993), including those

that may not have been captured by the questionnaire. This was an opportunity for the

respondent to elaborate on such experience/s.

50

Figure 4.1 Linking the Questionnaire to the Conceptual Framework

Each section of the questionnaire is specifically aimed at measuring the corresponding elements of the model representing the patient’s concerns, desires, expectations, perceived outcomes and satisfaction.

PRESENTATION Symptoms Experience

Observed deformity

DIAGNOSIS

NATURAL HISTORY or PROGNOSIS

CONCERNS • Present • Future • Treatment related TREATMENT OPTIONS

• Observation • Orthosis (brace) • Operation

DESIRES • Wishes • Needs

EXPECTATIONS • Desirable • Undesirable TREATMENT

OUTCOMES • Reduced deformity • Reduced future risks

PERCEIVED OUTCOMES

PATIENT SATISFACTION WITH OUTCOME

N E G O T I A T I O N

REFERRAL

Section IIIA

Section VA & B

Section VIB

Section VIIB

Sections IB; IIB; IIIB; VIIA

Section IIA

Section IA

Section VIA

Section IVA & B

RadiographsPhotographs

51

4.4 Parental Questionnaire (Appendix B)

The Parental Questionnaire comprised the identical questions featured in the Patient

Questionnaire except for the following differences. Parents were asked to report their

concerns about their child’s scoliosis, their perception of the problems experienced

by their child due to scoliosis, their perception of the likelihood of future problems

that their child might experience due to scoliosis in Sections I, II and III respectively. In

Section IV, parents were asked about what they wished or desired for their child from

the surgical treatment for scoliosis, and to rank their wishes in the order of most to

least important. In Section V, parents were asked to report their perception of the

likelihood that surgery for their child would accomplish each of the objectives listed as

well as the minimal change that they would accept for them to be satisfied with the

results of the surgery for their child. In Section VI, parents were asked to report their

level of concerns they had for each of the short and long term undesirable events and

adverse outcomes related to their child’s surgery, as well as their perception of the

likelihood of each of these events. In Section VII, parents were asked to rate their

perception of what the surgery had actually accomplished for each of the listed

items, as well as their level of satisfaction with results or changes pertaining to each

of these items. Finally, in Section VIII, parents were also asked to report any pleasant or

unpleasant surprises or unexpected events that they or their child might have

experienced following their child’s surgery. These responses collectively capture the

parents’ priorities.

While the parents’ priorities might be different from those of their child, we were also

interested in determining whether parents thought that their child might have different

priorities from them, and if so how well they were able to predict what their child’s

52

priorities were. Therefore for each of Sections I, II, III, IV and VIA, parents were also

asked to report how they felt their child would have responded for each of the items

in those sections, in addition to their own responses.

4.5 Surgeon Questionnaire (Appendix C)

The Surgeon Questionnaire was designed to facilitate valid comparisons between

surgeons’, patients’ and parents’ perspectives on the priorities of treatment of idiopathic

scoliosis. In the surgeon survey, the respondent was asked to consider a typical patient

with adolescent idiopathic scoliosis who met that surgeon’s criteria for surgery.

4.5.1 Section I

For this typical patient, the surgeon was asked in Section I to provide an estimation of

the likelihood (probability) that patient’s scoliosis might be associated with each of the 21

problems, if left untreated. These were the same 21 items featured in the patient and

parental questionnaires, which had been identified as issues relevant to patients,

parents, and/or surgeons during the developmental phase of the questionnaires.

Section I therefore measures the surgeon’s perception of the natural history of

adolescent onset idiopathic scoliosis when it has already reached the stage where

surgery might be offered. Section I of the Surgeon Questionnaire corresponds to the

Sections II and III in the Patient and Parental Questionnaires.

4.5.2 Section II

In Section II, the surgeon respondent was asked to report how often each of these 21

items was a goal of surgery.

4.5.3 Section III

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In Section III, the surgeon was asked to rank the goals of surgery in order of most to

least important. This corresponds to Section IVA of the Patient and Parental

Questionnaires, where respondents were asked to rank their reasons for surgery in

order of most to least important.

4.5.4 Section IV

Section IV of the Surgeon Questionnaire measures the surgeon’s expectations of

surgery or perceived likelihood (probability) that surgery would satisfactorily accomplish

each of the 21 goals listed. This corresponds to Section VA in the Patient and Parental

Questionnaires.

4.5.5 Section V

Section V measures the surgeon’s expectations of undesirable (adverse) events

following surgery of idiopathic scoliosis. In this section the surgeon was asked to report

his/her perception of the likelihood (probability) of each of the short term and long term

risks or adverse events following surgery for a typical patient with adolescent idiopathic

scoliosis. This section corresponds to Section VIB in the Patient and Parental

Questionnaires.

4.5.6 Section VI

It is unlikely that surgeons would be, nor would they necessarily be expected to be,

“concerned” about scoliosis in the way patients and their parents would be. However,

their knowledge and experience with this condition presumably provides them with

insight that they would be expected to share with patients and parents in order to either

alert them to potential consequences or to reassure them about other issues that they

believe are not likely to be associated with scoliosis or its treatment. Despite one’s

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compassion or caring for patients, there is likely to be an element of detachment that

attenuates one’s concerns considerably when it is not your own child that is the subject

of concern. Nonetheless, it would be interesting to determine what these concerns

might be if indeed the surgeon respondent was the parent of an adolescent child facing

surgery for idiopathic scoliosis. In order to measure surgeons’ “concerns” regarding

scoliosis, Section VI asks the surgeon respondent to imagine that it was the surgeon’s

daughter (and son) who had the idiopathic scoliosis and was a candidate for surgery.

Under these circumstances, given their knowledge and experience, how concerned

would the surgeon be (as a parent) for each of the 21 issues listed. The surgeon was

asked to report two sets of responses, one for a hypothetical daughter and one for a son

respectively.

4.6 Summary

The Patient, Parent and Surgeon Questionnaires were developed by directly involving

the most important stakeholders during the process. The items in the questionnaires

reflect the issues that are believed to be relevant to patients and their parents,

regardless of whether these issues are believed by surgeons to be related to the

diagnosis, prognosis, treatment or outcomes of idiopathic scoliosis. Face and content

validity was established by patients and parents during the process of developing the

questionnaire, as well as by paediatric orthopaedic surgeons involved in the care of

these patients. This is important, because content validated questionnaires are believed

to have the highest sensitivity for identifying patient requests, followed by semi-

structured and unstructured interviews(Uhlmann, Inui et al. 1984).

The questionnaire was structured based on a framework created in order to permit

empiric analyses of the relationship between patient priorities, perceived and actual

55

outcomes, as well as measures of satisfaction with specific outcomes. Although the

scope of this thesis was limited to the description and comparison of patient, parent and

surgeon priorities, the design and content of the questionnaires will permit deeper

explorations of the complex interaction between these concepts and the formulation of

patient satisfaction.

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CHAPTER 5

A Study to Compare Patients’, Parents’ and Surgeons’ Priorities

5.1 Introduction

This chapter describes the methods that were employed in the study of priorities of

adolescents with idiopathic scoliosis in order to contrast their priorities from those of their

parents, and surgeons who treat scoliosis. In this second stage of the research project,

the questionnaires described in Chapter 4 were used to conduct structured interviews of

patients who had undergone surgery for correction of their adolescent onset idiopathic

scoliosis, their parents and their surgeons. The questionnaires were designed

specifically to measure their concerns about scoliosis, concerns regarding surgery for

scoliosis, desires and goals of treatment, and expectations of scoliosis if not treated

(natural history) and expectations of desired and undesirable outcomes of treatment. In

the third stage, the Surgeon Questionnaire was used to conduct a national survey of all

surgeons involved in the management of adolescent spine deformity in Canada. The

specific aims of the thesis and hypotheses are elaborated and the corresponding

analyses described.

5.2 Study Design

This was a cross-sectional survey of patients, parents and surgeons involving a self-

administered questionnaire and structured personal interview.

5.3 Setting & Participants

The survey was nested within a randomized controlled trial comparing two

instrumentation systems for the surgical treatment of adolescent idiopathic scoliosis.

The trial was based at a single centre, The Hospital for Sick Children, Toronto, which is

the largest tertiary children’s hospital in Canada. The Division of Orthopaedic Surgery at

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the Hospital for Sick Children covers a wide geographic area, serving a population of

approximately 5 million. Patients in this cohort resided in a variety of urban, suburban

and rural environments primarily in Southern and South Central Ontario.

Patients: Any child with a diagnosis of adolescent onset idiopathic scoliosis, who had

participated in the randomized controlled trial, and had completed a minimum of 2 years

follow-up at the time of their assessment for this study, was eligible to participate.

Parents: Either or both parents of these children.

Surgeons: Four surgeons at The Hospital for Sick Children were involved in this trial.

All four surgeons had received at least part of their paediatric orthopaedic fellowship

training at the same institution, but 3 of the 4 surgeons had subsequently practiced at

other institutions prior to their appointment at The Hospital for Sick Children.

Additionally, any surgeon in Canada who was actively involved in the surgical

management of children with adolescent idiopathic scoliosis was eligible to participate in

the general survey of surgeons.

5.4 Ethical Approval

Ethical approval was obtained from the Research Ethics Board of The Hospital for Sick

Children to recruit patients from the trial, and their parents to participate in this study.

Ethical approval was also obtained for conduct of the surgeon surveys. Informed

consent was obtained from all the patient and parent participants. The information sheet

and consent forms for patients and parents are included in the respective questionnaires

(Appendix A & B). Consent was presumed by the completion and return of the survey

by the surgeons.

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5.5 Recruitment

Eligible patients were identified from the database of the randomized controlled trial.

The patients and parents were approached at the time of their routine two-year post-

operative follow-up visit. Patients who had already completed their 2-year follow-up visit,

received a letter, signed by the patient’s surgeon as well as the primary investigator,

outlining the objectives of the survey along with copies of the questionnaires, and

seeking their consent to participate. The letter also informed them that they would

receive a telephone call within 2 weeks of receipt of the package. At this call, additional

information was provided and informed consent obtained from patients and parent/s to

conduct the interview. Arrangements were then made to schedule and complete the

patient and parental interviews. Patients and their parent/s were provided with the

respective questionnaires to allow them to read and complete them prior to the

scheduled interview. They were instructed not to discuss the questionnaire with each

other until after the interview.

5.6 The Interview

The patient and parent interviews were all conducted by the principal investigator, who

was not involved directly in the clinical care of the patient. Interviews were conducted at

a time and location convenient for the patient and parents. Participants were offered the

choice of having the interviews done at their home, a convenient non-medical setting or

at The Hospital for Sick Children outside of the outpatient clinic setting. The majority of

interviews were conducted in the patients’ homes. For those patients who resided at a

distance from Toronto, and who were unable or unwilling to travel to Toronto, and did not

wish to have the interviews done at home, the interview was conducted by telephone.

This occurred three times. Patients and their parent/s were interviewed separately from

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each other, and their answers recorded on the patient and parental questionnaires

respectively.

5.7 Surgeon Survey

The four surgeons, who had participated in the randomized trial, were invited to

complete the surgeon’s questionnaire, which was self-administered.

The membership lists of the Scoliosis Research Society and the Paediatric Orthopaedic

Society of North America, as well as the personal directories of the surgeons at The

Hospital for Sick Children were used to identify all Canadian surgeons involved in the

surgical management of idiopathic scoliosis. A letter of invitation to participate in this

survey was sent to each of these surgeons along with information about the study. The

package included the survey for their completion and a stamped return envelope to mail

back the survey to the principal investigator. Concurrently, an electronic version of the

invitation and the survey was sent to all the surgeons for whom e-mail addresses were

available. Respondents were given the choice of returning the completed survey by e-

mail or printing a hard copy that could be mailed or faxed back. Approximately 2 weeks

after the initial mailing, surgeons’ offices were contacted and communication established

with the secretary or assistant of each of the surgeons to confirm receipt of the

questionnaire and to request completion. If the questionnaire had not been received,

another was mailed/e-mailed. This procedure was repeated at approximately 1 month

and 6 weeks after the initial mailing, unless the surgeon or assistant/secretary explicitly

communicated that the surgeon was unwilling or unable to participate in the survey.

75% participation was the target response rate.

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5.8 Analyses

5.8.1 Analysis of Concerns

I. Concerns Regarding Scoliosis (prior to surgery)

In Section IA of the Patient and Parental questionnaire, and Section VI of the Surgeon

questionnaire, respondents were asked to report how concerned they were prior to

surgery about a number of issues (because of scoliosis). Parents also rated their

perception of their child’s concerns for each of these issues. The magnitude of concern

was rated on a 6-point ordinal rating scale from “Not at all concerned” (0) to “Extremely

concerned” (5).

(a) Index of All Concerns Related to Scoliosis

The respondent’s ratings of level of concern for each of 21 items pertaining to concerns

regarding scoliosis were summed to produce a raw score of total concerns = Σ (Ci). The

ratio of the raw score of all concerns Σ (Ci) to the maximum possible score Σ (Cm),

multiplied by 100 generated the Index of All Concerns Related to Scoliosis which could

range from 0 (no concerns) to 100 (extreme concerns). These were reported for (i)

Patients, (ii) Parents, (iii) Parents’ perception of their child’s concerns, and (iv) Surgeons,

respectively. The Surgeon Index of All Concerns Related to Scoliosis was derived from

the corresponding Section VI of the Surgeon Questionnaire.

(b) Index of Presenting Concerns Related to Scoliosis

Of the 21 listed concerns, eight of these items can be categorized as concerns

pertaining to the patient’s “present” experience (at the time). The respondent’s level of

concern for each of these eight items pertaining to concerns for the present, were

summed to produce a raw score of presenting concerns = Σ (Cip). The ratio of the raw

score of presenting concerns Σ (Cip) to the maximum possible score Σ (Cmp), multiplied

by 100 generated the Index of Presenting Concerns Related to Scoliosis for (i) Patients,

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(ii) Parents, (iii) Parents’ perception of their child’s concerns, and (iv) Surgeons

respectively, which could range from 0 (no concerns) to 100 (extreme concerns).

(c) Index of Future Concerns Related to Scoliosis

Similarly the respondent’s ratings of level of concern for each of 13 items pertaining to

concerns for the future were summed to produce a raw score of future concerns = Σ

(Cif). The ratio of the raw score of future concerns Σ (Cif) to the maximum possible score

Σ (Cmf), multiplied by 100, produced the Index of Future Concerns Related to Scoliosis

for (i) Patients, (ii) Parents, (iii) Parents’ perception of their child’s concerns, and (iv)

Surgeons respectively, also yielding a range of scores from 0 (no future concerns) to

100 (extreme future concerns).

Aim 1: Describe and compare patients’, parents’ and surgeons’ concerns about

perceived problems of scoliosis.

Means and standard deviations of the Concerns Regarding Scoliosis (concerns prior to

treatment) were determined for (a) Index of All Concerns Related to Scoliosis, (b) Index

of Presenting Concerns Related to Scoliosis, and (c) Index of Future Concerns Related

to Scoliosis, for (i) Patients, (ii) Parents, (iii) Parents’ perception of their child’s concerns,

and (iv) Surgeons respectively. The mean and standard deviation scores for concerns

were determined for each of the 5 domains: (i) physical appearance, (ii) pain, (iii)

physical function, (iv) psychosocial: social function, emotions/self esteem, and (v) health.

Hypothesis 1: Patients’ (pre-treatment) concerns about scoliosis are different from their

Parents’ (pre-treatment) concerns.

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Hypothesis 2: Patients’ and Parents’ (pre-treatment) concerns about scoliosis are

different from Surgeons’ (pre-treatment) concerns.

Although patients (and parents) could be matched with their operating surgeon, the

surgeon’s responses regarding their concerns for scoliosis (Section VI of the Surgeon

Questionnaire) were not directed to each specific patient. Instead they were asked to

assume the role of a parent with a child who had scoliosis, who met their criteria for

surgery, and to report their concerns for this hypothetical child using their knowledge, as

a medical expert in this area, of the natural history of adolescent idiopathic scoliosis.

Surgeons reported two sets of concerns, for a hypothetical adolescent daughter and an

adolescent son who had scoliosis respectively, on the assumption that their concerns

might have been different depending on whether their child with scoliosis was their

daughter or son.

This strategy of exploring surgeons’ “concerns” was an attempt to make the comparison

between patients’, parents’ and surgeons’ concerns more credible. Surgeons were

unlikely to be “concerned” for patients in the same way patients or their parents would

be. As a hypothetical parent of a child with scoliosis however, a surgeon might be able

to express concerns (albeit hypothetical) such as a parent would. These “concerns”

might be different, because the surgeon’s knowledge and experience with this condition

in other patients would provide him/her with insight not normally available to a parent

who is a “lay person” in this field. Presumably, this insight is what surgeons share with

their patients and patients’ parents, which in turn influences the formulation of their

patients’ (and the parents’) concerns, desires and expectations.

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In order to compare surgeons’ concerns with patients’ and parents’ concerns, two

different analyses were performed.

1. Patients’ (and their parents’) concerns were compared with the concerns of their

respective surgeon (one of four surgeons at The Hospital for Sick Children) using

the appropriate gendered (daughter or son) responses of the surgeon. This

matched comparison used a repeated measures analysis of variance and paired

t-tests. Therefore, the same surgeon’s responses was matched to more than

one pair of patients and parents, i.e., to every patient that they treated.

2. Analysis of Variance and Student T-tests were used to compare the means

scores of the various indices of concerns of patients and parents with all

surgeons (the Hospital for Sick Children group as well as the Canadian

Surgeons).

Hypothesis 3: Patients’ (pre-treatment) concerns about scoliosis are different from their

Parents’ perception of their child’s (pre-treatment) concerns.

Patients were matched with their parents. Repeated measures analysis of variance and

paired t- tests were used to compare mean scores of (i) Patients, (ii) Parents, and (iii)

Parents’ perception of their child’s concerns, in order to test the above hypotheses. The

degree of concordance between the patients’ responses and their parents’ perception of

their responses was assessed using the Intraclass Correlation Coefficient (ICC).

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II. Concerns Regarding Surgery (Undesirable Outcomes & Adverse Events)

In Section VIA of the Patient and Parent questionnaires, concerns about undesirable

outcomes or adverse events that might arise from surgery for scoliosis were rated on 6-

point ordinal rating scale from “Not at all concerned” (0) to “Extremely concerned” (5) for

each of these events. 24 possible complications or adverse events were categorized as

short term problems (11 items) or long term adverse outcomes (13 items).

(a) Index of Concerns for All Undesirable Events

A combined Index of Concerns for all Undesirable Events was generated from the ratio

of raw score of concerns for all 24 undesirable events Σ (Cut) to the maximum possible

score Σ (Cmt), multiplied by 100 for (i) Patients, (ii) Parents and (iii) Parents’ perception of

their child’s concerns, respectively.

(b) Index of Concerns for Short Term Undesirable Events

The respondent’s ratings of level of concern for each of the 11 short term events were

summed to produce a raw score of concerns for short term undesirable events = Σ (Cus).

The ratio of the raw score of concerns for short term undesirable events Σ (Cus) to the

maximum possible score Σ (Cms), multiplied by 100 generated the Index of Concerns for

Short Term Undesirable Events, following treatment for (i) Patients, (ii) Parents and (iii)

Parents’ perception of their child’s concerns, respectively.

(c) Index of Concerns for Long Term Undesirable Events

Similarly, the Index of Concerns for Long Term Undesirable Events following treatment,

was generated by the ratio of the raw score of concerns for long term undesirable

events, Σ (Cul) to the maximum possible score Σ (Cml), multiplied by 100 for (i) Patients,

(ii) Parents and (iii) Parents’ perception of their child’s concerns, respectively.

Aim 2: Describe and compare patients’, parents’ and parent’s perception of their child’s

concerns about surgery of scoliosis.

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Means and standard deviations of the patients’ and parents’ Concerns Regarding

Surgery for Scoliosis (experienced prior to surgery) were determined using the Index of

Concerns for (a) All, (b) Short Term, and (c) Long Term Undesirable Events following

surgery for (i) Patients, (ii) Parents and (iii) Parents’ perception of their child’s concerns.

Hypothesis 4: Patients’ (pre-treatment) concerns about surgery for scoliosis are

different from their Parents’ (pre-treatment) concerns about surgery for scoliosis.

Hypothesis 5: Patients’ (pre-treatment) concerns about surgery for scoliosis are

different from their Parents’ perception of their child’s (pre-treatment) concerns about

surgery for scoliosis.

Repeated measures analysis of variance and paired t- tests were used to compare

mean scores of (i) Patients, (ii) Parents, and (iii) Parents’ perception of their child’s

concerns, in order to test the above hypothesis. The degree of concordance between

the patients’ responses and their parents’ perception of their responses was assessed

using the Intraclass Correlation Coefficient (ICC).

5.8.2 Analysis of Desires (wishes) and Goals of Surgery

Aim 3: Describe patients’ and parents’ desires (wishes) of the surgical treatment of

scoliosis and surgeons’ goals of surgery for scoliosis; and compare patients’ and

parents’ rankings of desires (wishes) of the surgical treatment of scoliosis with the

surgeons’ rankings of goals of surgery.

Desires were defined as patients’ (parents’) wishes regarding medical care; the

perception that a given event or outcome was wanted. These correspond to the goals of

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treatment from the surgeons’ perspective. For this study, patient (parental) desires and

surgeon goals were operationalized in two ways.

I. Strength of Desires (Goals) of Surgery for Scoliosis

In Section IVA of the Patient and Parent Questionnaire, the respondent was asked to

report how much he/she wished or desired that the treatment (surgery) would

accomplish a particular objective or goal. This was rated on a 6-point ordinal rating

scale from “Not at all desired” (0) to “Very strongly desired” (5). This corresponded to

Section II of the Surgeon Questionnaire, in which surgeons were asked to report how

often each of these issues were included in their goals of surgery.

(a) Index of All Desires (Goals) of Surgery for Scoliosis

The respondent’s ratings of the level of desire for each of the 21 items or wishes of

surgery were summed to produce a raw score of total desires = Σ (Di). The ratio of the

raw score of all desires Σ (Di) to the maximum possible score Σ (Dm), multiplied by 100

generated the Index of All Desires of Surgery, which could range from 0 (no desires at

all) to 100 (maximum desires). These were determined for (i) Patients, (ii) Parents, and

(iii) Parents’ perception of their child’s desires. The corresponding Surgeon Index of All

Goals of Surgery was derived from Section II of the Surgeon Questionnaire.

(b) Index of Immediate Desires (Goals) of Surgery for Scoliosis

Of the 21 listed wishes, eight of these items could be categorized as desires for the

present, or more immediate objectives of surgery, while the remaining thirteen items

were desires for future objectives. The respondent’s ratings of the strength of wishes for

each of these eight items were summed to produce a raw score of immediate desires =

Σ (Dip). The ratio of the raw score of immediate desires Σ (Dip) to the maximum possible

score Σ (Dmp), multiplied by 100 generated the Index of Immediate Desires of Surgery for

(i) Patients, (ii) Parents, and (iii) Parents’ perception of their child’s wishes, which could

67

range from 0 (no desires at all) to 100 (maximum desires). The corresponding Surgeon

Index of Immediate Goals of Surgery was derived from same items of Section II of the

Surgeon Questionnaire.

(c) Index of Future Desires (Goals) of Surgery for Scoliosis

The respondent’s ratings of the level of desire for each of 13 items pertaining to desires

for the future were summed to produce a raw score of future desires = Σ (Dif). The ratio

of the raw score of future concerns Σ (Dif) to the maximum possible score Σ (Dmf),

multiplied by 100, produced the Index of Future Desires of Surgery for (i) Patients, (ii)

Parents, and (iii) Parents’ perception of their child’s desires, respectively, also yielding a

range of scores from 0 (no future desires) to 100 (maximum future desires). The

corresponding Surgeon Index of Future Goals of Surgery was derived from same items

of Section II of the Surgeon Questionnaire.

Means and standard deviations of the Desires of Surgery (desires prior to treatment)

were determined for (a) Index of All Desires (Goals) of Surgery, (b) Index of Immediate

Desires (Goals) of Surgery, and (c) Index of Future Desires (Goals) of Surgery, for (i)

Patients, (ii) Parents, and (iii) Parents’ perception of their child’s Desires. The means

(ranges) and standard deviations of the levels of desires were also determined for each

item on the list of wishes of surgery in Section IVA of the patient and parent

questionnaires, as well as for the five domains: (i) physical appearance, (ii) pain, (iii)

physical function, (iv) psychosocial: social function, emotion/self esteem, and (v) health.

The corresponding means (ranges) and standard deviations of the Frequency of Goals

for Surgeons were determined from responses to Section II of the Surgeon

questionnaire.

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Hypothesis 6: Patients’ (pre-treatment) desires are different from their Parents’ (pre-

treatment) desires of surgery for scoliosis.

Hypothesis 7: Patients’ (pre-treatment) desires are different from their Parents’

perception of their child’s (pre-treatment) desires of surgery for scoliosis.

Repeated measures analysis of variance and paired t- tests were used to compare

mean scores of (i) Patients, (ii) Parents, and (iii) Parents’ perception of their child’s

desires, in order to test the above hypothesis.

II. Desires & Goals of Surgery Ranked in Order of Importance

The second way in which patients’ and parents’ desires (wishes) of surgery were

measured was featured in Section IVB of the Patient and Parent Questionnaires.

Respondents were asked to rank their top 10 wishes or desires in order of “most to least

important reason” for undergoing surgery. Surgeons were similarly asked to rank their

goals in order of “most to least important reason” in Section III of the Surgeon

Questionnaire.

The overall rankings from most to least desired priorities were determined for patients

and parents respectively. Similarly, the overall rankings of surgeon goals were

determined from Section III of the Surgeon Questionnaire.

Hypothesis 8: Patients’ and Parents’ ranking of importance of (pre-treatment) desires

of surgery are different from Surgeons’ ranking of importance of goals of surgery.

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The rank order of priorities was compared between patients, parents and surgeons using

Spearman rank correlation coefficients and Kendall’s W (coefficient of concordance) to

determine the association between and the extent of agreement among patients, parents

and surgeons ranking of each of the desires (goals) as well as by domain for: Patient

versus Parent; Patient versus Surgeon; and Parent versus Surgeon.

5.8.3 Analysis of Expectations

Expectations were defined as the estimation of the likelihood that a given event or

outcome might occur. Expectations could be directed towards the condition itself (the

prognosis or natural history of the untreated condition) or towards the outcomes of

treatment, which could include both desired and undesirable outcomes.

I. Expectations of Scoliosis: Perception of Natural History (Prior to Surgery)

In Section IIIA of the Patient and Parent questionnaires, the respondents were asked to

report their perception of the likelihood that a given event might occur in the future

because of the scoliosis, if it was not treated. This likelihood was rated on an eight point

ordinal scale of probabilities ranging from “Not a problem: 0%” (0) to “Extremely likely: >

95%” (7). The surgeon’s perspective on the natural history of untreated idiopathic

scoliosis was measured in Section I of the Surgeon Questionnaire. The surgeon

respondent was asked to consider a typical patient with adolescent idiopathic scoliosis

who met that surgeon’s criteria for recommending surgery, and to report the likelihood

that each of the listed events might occur, using a range of probabilities from “Never:

0%” (0) to “Extremely likely: > 95%” (7).

70

Aim 4: Describe and compare patients’, parents’ and surgeons’ expectations of the

natural history of scoliosis.

Means and standard deviations were determined for the perceived likelihood that a given

event might occur in the future because of the scoliosis, if it was not treated from the

perspective of (i) Patients, (ii) Parents, (iii) Parents’ perception of their Child’s

expectations, and (iv) Surgeons, respectively. The mean and standard deviations for the

likelihood of events were also determined for each of the 5 domains: (i) physical

appearance, (ii) pain, (iii) physical function, (iv) psychosocial: social function,

emotion/self esteem, and (v) health.

Hypothesis 9: Patients’ (pre-treatment) expectations about scoliosis are different from

their Parents’ (pre-treatment) expectations about scoliosis.

Hypothesis 10: Patients’ (pre-treatment) expectations about scoliosis are different from

their Parents’ Parents’ perception of their child’s (pre-treatment) expectations about

scoliosis.

Patients were matched with their parents. Repeated measures analysis of variance and

paired t- tests were used to compare mean scores of (i) Patients, (ii) Parents, and the

(iii) Parents’ perception of their child’s expectations.

Hypothesis 11: Patient’s and Parents’ expectations of the natural history of scoliosis

are different from Surgeon’s expectations of the natural history.

Surgeons’ expectations were compared with patients’ and parents’ expectations, using

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1. Repeated measures analysis of variance and paired t-tests, when patients’ (and

their respective parents’) expectations were compared with the expectations of

their respective surgeon (surgeons at The Hospital for Sick Children).

2. Analysis of Variance and Student t-tests to compare the means scores of the

expectations of patients and parents with those of all surgeons surveyed (all

Canadian surgeons’ responses).

II. Expectations of Desired Outcomes of Surgery for Scoliosis

In this study, expectations of surgery for scoliosis were operationalized in two ways.

A. Likelihood or Probability of a Desired Result (Expectancy)

In Section VA of the Patient and Parent Questionnaires, the respondents were asked to

report how likely they think it is that surgery will accomplish each of the 21 listed goals.

Their perception of the likelihood of each result occurring was rated on an 8-point ordinal

rating scale ranging from “Never: 0%” (0) to “extremely likely: >95%” (7). The surgeons’

perception of the expected outcomes of surgery, were similarly measured in Section IV

of the Surgeon Questionnaire. The surgeon respondent was asked to report their

perception of the likelihood of each of the same listed events using the same rating

scale.

(a) Index of All Expectations of Surgery for Scoliosis

The respondent’s ratings of the likelihood for each of 21 items of surgery, were summed

to produce a raw score of total expectations = Σ (Ei). The ratio of the raw score of all

expectations Σ (Ei) to the maximum possible score Σ (Em), multiplied by 100 generated

the Index of All Expectations of Surgery, which could range from 0 (no expectations) to

100 (maximum expectations). These were determined for (i) Patients, (ii) Parents, and

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(iii) Surgeons. The Surgeon Index of All Expectations of Surgery was derived from

Section II of the Surgeon Questionnaire.

(b) Index of Immediate Expectations of Surgery for Scoliosis

Of the 21 listed wishes, eight of these items could be categorized as expectations for

more immediate objectives of surgery, while the remaining thirteen items were

expectations for future objectives. The respondent’s ratings of the likelihood for each of

these eight items were summed to produce a raw score of immediate expectations = Σ

(Eip). The ratio of the raw score of immediate expectations Σ (Eip) to the maximum

possible score Σ (Emp), multiplied by 100 generated the Index of Immediate Expectations

of Surgery for (i) Patients, (ii) Parents, and (iii) Surgeons respectively, which could range

from 0 (no expectations) to 100 (maximum expectations).

(c) Index of Future Expectations of Surgery for Scoliosis

The respondent’s ratings of the likelihood for each of 13 items pertaining to expectations

for the future were summed to produce a raw score of future expectations = Σ (Eif). The

ratio of the raw score of future expectations Σ (Eif) to the maximum possible score Σ

(Emf), multiplied by 100, produced the Index of Future Expectations of Surgery for (i)

Patients, (ii) Parents, and (iii) Surgeons respectively, also yielding a range of scores

from 0 (no expectations) to 100 (maximum expectations).

B. Minimal Acceptable Result to be Satisfied (Value)

The second method, by which patient and parental expectations of surgery were

measured, was featured in Section VB of the Patient and Parent questionnaire. The

minimal acceptable result was defined as the minimum change (improvement or

reduction of future risk) that would have been acceptable to the patient or parent in order

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to be satisfied. This was rated on a 6-point ordinal scale ranging from “no change” (0) to

“very large change” (5) for each of the 21 listed items.

Aim 5: Describe and compare patients’, parents’ and surgeons’ expectations of desired

outcomes of surgery for scoliosis.

Means and standard deviations of the patients’ and parents’ and surgeons’

Expectations of Desired Outcomes of Surgery for Scoliosis were determined using the

Index of Expectations for (a) All, (b) Immediate, and (c) Future expectations of surgery

for (i) Patients’, (ii) Parents’ and (iii) Surgeons, respectively. The mean and standard

deviations for the likelihood of events were also determined for each of the 5 domains: (i)

physical appearance, (ii) pain, (iii) physical function, (iv) psychosocial: social function,

emotion/self esteem, and (v) health.

Hypothesis 12: Patients’ (pre-treatment) expectations of surgery for scoliosis are

different from parents’ (pre-treatment) expectations of surgery.

Hypothesis 13: Patients’ and Parents’ (pre-treatment) expectations of surgery for

scoliosis are different from surgeons’ (pre-treatment) expectations of surgery.

Patients were matched with their parents and their treating surgeon. Repeated

measures analysis of variance and paired t- tests were used to compare mean scores of

expectations of (i) Patients, (ii) Parents, and their treating (iii) Surgeons. Analysis of

variance and student t-tests were used when the mean scores of Patients’, Parents’ and

all Surgeons’ expectations were compared.

74

III. Expectations of Undesirable Events of Surgery for Scoliosis

In Section VI B of the Patient and Parent questionnaire, and Section V of the Surgeon

Questionnaire, respondents were asked to provide their estimation of the likelihood of

undesirable events or adverse outcomes that they believed might be associated with

surgery. These were rated on an 8-point ordinal rating scale of probabilities ranging

from “Never: 0%” (0) to “Extremely likely: > 95%” (7). The events could be categorized

as short term problems (11 items) as well as long term adverse outcomes (13 items).

(a) Index of Expectations for all Undesirable Events

A combined Index of Expectations for all Undesirable Events was generated from the

ratio of raw score of expectation for all 24 undesirable events Σ (Eu) to the maximum

possible score Σ (Emu), multiplied by 100 for (i) Patients, (ii) Parents and (iii) Surgeons,

respectively.

(b) Index of Expectations for Short Term Undesirable Events

The respondent’s ratings of the likelihood for each of the 11 short term events were

summed to produce a raw score of expectations for short term undesirable events = Σ

(Eus). The ratio of the raw score of expectations for short term undesirable events Σ (Eus)

to the maximum possible score Σ (Ems), multiplied by 100 generated the Index of

Expectations for Short Term Undesirable Events following treatment, for (i) Patients, (ii)

Parents and (iii) Surgeons, respectively.

(c) Index of Expectations for Long Term Undesirable Events

Similarly, the Index of Expectations for Long Term Undesirable Events following

treatment, was generated by the ratio of the raw score of expectations for long term

undesirable events, Σ (Eul) to the maximum possible score Σ (Eml), multiplied by 100 for

(i) Patients, (ii) Parents and (iii) Surgeons expectations, respectively.

75

Aim 6: Describe and compare patients’, parents’ and surgeons’ expectations of

undesirable outcomes of surgery for scoliosis.

Means and standard deviations of the patients’ and parents’ Expectations of Undesirable

Events of Surgery for Scoliosis were determined using the Index of Expectations for (a)

All, (b) Short Term, and (c) Long Term Undesirable Events following surgery for (i)

Patients, (ii) Parents and (iii) Surgeons, respectively.

Hypothesis 14: Patients’ (pre-treatment) expectations of undesirable events of surgery

for scoliosis are different from Parents’ expectations of undesirable events of surgery.

Hypothesis 15: Patients’ and Parents’ (pre-treatment) undesirable expectations of

surgery for scoliosis are different from Surgeons’ undesirable expectations of surgery.

Patients were matched with their parents and their treating surgeon. Repeated

measures analysis of variance and paired t- tests were used to compare mean scores of

(i) Patients, (ii) Parents, and their treating (iii) Surgeons. Analysis of variance and

student t-tests were used when the mean scores of Patients’, Parents’ and all Surgeons’

expectations were compared.

5.8.4 Other Data

In addition to the interview, the following data were collected separately as part of the

protocol of the randomized controlled trial in which these patients were participants.

1. Scoliosis Research Society (SRS) outcomes instrument (includes a measure of

satisfaction)

2. Quality of Life Profile for Spinal Deformities (QLPSD)

3. Activities scale for kids

76

4. Deformity assessment including clinical, radiographic and photographic parameters

5. Demographic information including educational level, employment status and socio-

economic status of parents.

5.9 Sample size and power estimation

If α is set at 0.01 (arbitrarily to adjust for multiple comparisons) and the standard

deviation of the differences in mean scores is conservatively estimated to be about 25%,

for the repeated measures analysis of variance, a sample size of 77 triads (patients,

parents, surgeons) has 80% power to detect a mean difference of 10% points. A sample

size of 36 triads has 80% power to detect 15% point difference, which would be a

clinically more meaningful difference in index scores. By June of 2001, 64 patients

enrolled in the randomized controlled trial had undergone surgery and had completed 2-

years of post-operative follow-up. These patients and their parents were eligible for

recruitment in this study.

5.10 Respondents

64 patients, who were enrolled in the randomized controlled trial, had completed at least

2 years follow-up by June 30, 2001. This was the target population for this study. 55

patients and their parents completed the interviews, for an 86% response rate. 48 of the

55 patients were girls. The proportion of boys in this sample 7/55 (12.7%) is in keeping

with the gender distribution of adolescent idiopathic scoliosis. The age of these patients

at the time of the interviews ranged from 12 years to 18.3 years, with an average age of

14.3 years (SD: 1.5 years).

26 of these interviews were conducted in the patients’ homes. The average distance

traveled to and from these interviews was 135 kilometres (range: 10 km to 543 km). 25

77

interviews were conducted in a non-clinic setting (family conference room) at the

Hospital for Sick Children. Families were reimbursed for their parking and traveling

expenses, if they were coming to the Hospital for Sick Children solely for the purpose of

this interview. Three interviews were conducted over the telephone. Two of these

patients lived in Northern Ontario (Sault St. Marie), and one had moved to Ohio in the

United States. The geographic distribution of the participants is noted in Appendix 8.

All four orthopaedic surgeons of the patients who participated in the trial completed the

Surgeon Survey.

Across Canada, 33 orthopaedic surgeons were initially identified for the Surgeon Survey.

Two of these had retired and one had relocated overseas, and were therefore excluded.

Of the remaining 30 surgeons surveyed, 24 completed and returned their surveys by e-

mail, fax or regular mail, for an 80% response rate. One surgeon returned the

completed survey but explicitly forbid its use unless his institution’s and his “name clearly

appear in the research paper and not as an acknowledgement”. Since the completion of

the survey does not meet accepted criteria for authorship, this surgeon’s data were

excluded. The remaining surgeons did not return the survey despite three reminders.

The participating surgeons practice in British Columbia, Alberta, Manitoba, Ontario,

Quebec, and Nova Scotia. 20/24 (83%) of these surgeons were paediatric orthopaedic

fellowship trained, while the four had completed spinal fellowships only. Three of the 24

had both paediatric orthopaedic and spine fellowship training. All 24 surgeons practiced

in University affiliated teaching hospitals and were involved in training orthopaedic

residents. 18/24 (75%) were also involved with fellowship training. 19/24 (79%)

practiced in a children’s hospital. 16 surgeons had some type of membership status with

the Scoliosis Research Society, while eight were not members. The median “years in

78

practice” was between 15 to 20 years. 10 of these surgeons had practiced for at least

for 20 years, while seven had practiced for less than 10 years. The median percentage

of surgical practice devoted to scoliosis was 10% to 25%, with only 6 surgeons devoting

greater than 50% of their surgical time to scoliosis surgery.

5.11 Non-respondents

There were different reasons why the 9 sets of patients and parents did not participate.

Not locatable (2): In two instances, the families could not be contacted at the last

recorded address and telephone numbers. The services of a private investigator failed

to locate one of these patients, and no follow-up information was available on this

patient. The second patient and her parents were involved in the initial pilot testing of

the questionnaires, but at the 2-year follow-up time point could not be contacted either

by mail or by telephone. At the pilot interview, the patient and her parents were very

enthusiastic to participate and at the time seemed pleased with the outcomes of surgery

to date.

Willing but unavailable for interview (1): An interview was arranged at the family’s

home, but neither the patient nor the mother was present at the scheduled time. They

had forgotten about the meeting, which was rescheduled. They were not present at the

second visit to the home either. A message was left for the family to contact the primary

investigator if they wished to reschedule the interview at a different time. There was no

response.

In the following six cases the patient and/or parents were unwilling to participate. All

were willing to explain their reasons over the telephone.

79

Patient willing/Parents not (2): In one instance, the patient was a 17 year old boy,

who at initial contact stated that he was willing to participate and was prepared to drive

to Toronto for the interviews. A second call was made to speak with his parents who

were not present at the first call. The patient’s mother did not want to participate,

because she wanted him to “get on with his life”. She agreed to think about it and a

second telephone call was scheduled. At the second call the patient’s mother reiterated

that she did not wish to participate primarily because of the “timing” and that her son was

now “17 ½ - life is busy”. She was however willing to elaborate on their experience over

the telephone. She stated that things were “emotionally very hard” prior to surgery.

Bracing had not worked. Her son had refused to wear the brace during the day. After

surgery, she reported that her son “took a long time to recover both physically and

emotionally”, but he had now “moved beyond it”. He had recently obtained his driver’s

license and was looking at universities. She would have liked “the opportunity to speak

with other parents directly”. She felt that her son would “like to forget it”. She was happy

with the results of the surgery and felt that her son’s responses “would (also) be

extremely positive”. She stated that her husband felt the same way.

In the second instance, the family had received the package. The 19 year old patient

stated that she was willing to participate, but that her mother was not. A second call was

made to speak with her mother who confirmed that she did not wish to participate. She

stated that her daughter had had “a very difficult time” prior to surgery. The diagnosis

was made quite late and the scoliosis “was too severe to brace”. She reported that her

daughter was anorexic and “wanted to die”. She thought that the “care (her daughter

received was great”. “Surgery was the best thing that happened”. Although, the mother

said she would talk to her daughter again and think about participating in the interview,

she did not respond to the voice mail message left to remind her.

80

Parents willing; Patient not (2): One 16 year old patient refused to participate in the

study or discuss her experience over the telephone because she was “busy”, but gave

permission to talk with her parents. Her parents stated that they were willing to

participate, and did return the completed parent questionnaires. Over the telephone, the

mother stated that her daughter had a problem with her scar following surgery. She was

also “uncomfortable talking about her back”. She had “emotional issues” at school.

Nevertheless she felt that her daughter was satisfied with the surgery and now “wears

everything”. She was currently choosing which university to attend.

One 17 year old girl had had a post-operative complication that necessitated removal of

the rods one day after surgery and replacing the instrumentation a few days later. Both

mother and father were willing to participate but reported that in discussing this with their

daughter, she was unwilling, as “she would like to forget the experience”.

Neither Patient nor Parent willing (2): One family declined the invitation to participate

because they were busy moving house and changing jobs, and did not have the time.

On the telephone the mother reported her satisfaction with the results of the surgery. At

1 year following surgery things were “perfect”, but at 2 years things seemed to get worse

because the “hump (was) coming back”. The patient was also busy with work. She

reported that she was “very satisfied” with surgery. She reported no back pain and had

no problems with her scar.

Finally, one family was unwilling to participate because their 15 year old daughter had

experienced a significant neurological complication following surgery. Neither the

patient nor the parents wished to be interviewed. They felt that further discussion

“doesn’t help anymore”.

81

CHAPTER 6 Concerns Regarding Scoliosis & Surgery for Scoliosis

6.1 Concerns Regarding Scoliosis

Aim 1 of this thesis was to describe and compare patients’, parents’ and surgeons’

concerns about perceived problems of scoliosis. Respondents were asked to rate the

magnitude of their concerns regarding scoliosis (prior to surgery) for 21 items on a 6-

point ordinal scale of 0 (not at all concerned) to 5 (extremely concerned). Means and

standard deviations of the Concerns Regarding Scoliosis (concerns prior to treatment)

were determined for (a) Index of All Concerns Related to Scoliosis, (b) Index of

Presenting Concerns Related to Scoliosis, and (c) Index of Future Concerns Related to

Scoliosis, for (i) Patients, (ii) Parents, (iii) Parents’ perception of their child’s concerns,

and (iv) Surgeons respectively. The mean and standard deviation scores for concerns

were determined for each of the 5 domains: (i) physical appearance, (ii) pain, (iii)

physical function, (iv) psychosocial function, and (v) health.

6.1.1 Patients’ Concerns Regarding Scoliosis (Prior to Surgery)

Patients reported a wide range in their overall level of concern about their scoliosis prior

to surgery. The magnitude of overall concern as measured by the mean Index of All

Concerns was 51.01 (out of a maximum 100). Patients’ level of concern for their future

(Index of Future Concerns Related to Scoliosis) was identical to their level of concern for

the “present” (Index of Presenting Concerns related to Scoliosis). Analyzed by domain,

patients report that prior to surgery they were very concerned about items pertaining to

Physical Appearance and Back Pain; somewhat concerned about Physical Function

issues, and only slightly concerned about Health related and Psychosocial issues.

(See Table 6.1. & Figure 6.1)

82

Table 6.1 Patients’ Concerns Regarding Scoliosis Mean scores (std. dev); Ranges All Patients (n=55) Girls (n=48) Boys (n=7)

Index of All Concerns

51.01 (20.79) 2.86 – 91.43

51.19 (20.73) 2.86 – 91.43

49.80 (22.78) 8.57 – 82.86

Index of Presenting Concerns

52.09 (21.15) 0 – 90.00

52.66 (20.71) 0 – 90.00

48.21 (25.40) 7.50 – 80.00

Index of Future Concerns

50.35 (22.08) 5.00 – 92.00

50.29 (22.10) 4.62 – 92.31

50.77 (23.67) 9.23 – 84.62

Appearance Concerns

69.27 (24.10) 0 - 100

69.79 (23.02) 0 – 100

65.71 (32.59) 0 – 100

Pain Concerns

65.45 (21.62) 0 - 100

66.94 (20.58) 0 – 93.33

55.24 (27.41) 26.67 – 100

Physical Function Concerns

50.91 (22.14) 0 – 96.00

50.50 (22.47) 0 – 96.00

53.71 (21.15) 20.00 – 80.00

Psychosocial Concerns

43.27 (27.07) 0 - 100

42.86 (26.90) 0 – 100

46.12 (30.30) 0 – 82.86

Health Concerns

44.73 (28.14) 0 - 100

45.52 (28.21) 0 - 100

39.29 (29.22) 0 – 75.00

Patients' Concerns Regarding Scoliosis

0.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

All Concerns PresentingConcerns

FutureConcerns

AppearanceConcerns

PainConcerns

FunctionConcerns

PsychosocialConcerns

HealthConcerns

Mea

n In

dex

All PatientsGirlsBoys

Figure 6.1 Patients’ mean level of concerns overall and by domain, with standard deviations.

83

Analyzed by individual items, patients reported a wide range of concerns, from “not at all

concerned” to “extremely concerned” (0 – 5) for all of these items. Patients reported that

as a result of their scoliosis they had greatest concerns about the following items prior to

surgery (mean score out of maximum of 5; standard deviation).

i. Physical appearance in the future (3.65; 1.37): 64% (35/55) of patients reported that

they were either “very concerned” or “extremely concerned” about the effect of

scoliosis on their future physical appearance;

ii. Having to wear a brace (3.47; 1.80): 62% (34/55) of patients reported that they were

either “very concerned” or “extremely concerned” about having to wear a brace

because of their scoliosis;

iii. Risk of future back pain (3.47; 1.2): 53% (29/55 ) of patients reported that they were

either “very concerned” or “extremely concerned” about future back pain due to their

scoliosis;

iv. Physical appearance at the time (3.27; 1.37): 47% (26/55) of patients reported that

they were either “very concerned” or “extremely concerned” about the effect of

scoliosis on their present (prior to surgery) physical appearance; and

v. Future physical activities (3.20; 1.25): 45% (25/55) of patients reported that they

were either “very concerned” or “extremely concerned” about the effect of scoliosis

on their physical activities in the future.

Overall, patients were least concerned about the effects of scoliosis on sexual function;

friendships and future relationships; their lifespan; on future pregnancy and childbirth; or

on their future career and employment prospects, with at least half the 55 patients

surveyed reporting that they were “hardly” or “not at all concerned” about these issues.

However, there were at least some patients, between 7/55 (15%) and 14/55 (25%), who

reported that they were “very concerned” or “extremely concerned” about these issues.

84

The boys in this cohort were not very different from the girls, sharing four of the top five

concerns of girls. “Having to wear a brace” was one of the top five concerns for girls,

which in aggregate seemed less of a concern for boys. However, three of seven boys

did in fact report that they were “very concerned” or “extremely concerned” about brace-

wear, while the other four reported that they were “hardly” or “not at all concerned” about

this. The boys seemed somewhat more concerned about the effect of scoliosis on their

future self esteem than girls.

6.1.2 Parents’ Concerns Regarding Scoliosis (Prior to Surgery)

Parents reported a wide range in their overall level of concern about their children’s

scoliosis prior to surgery. In general, parents had greater concerns and a larger number

of serious concerns. The magnitude of overall concern as measured by the mean Index

of All Concerns was 66.56 (out of a maximum 100). Parents’ level of concern for their

children’s future (Index of Future Concerns Related to Scoliosis) was slightly greater

than their level of concern for the “present” (Index of Presenting Concerns related to

Scoliosis). Analyzed by domain, parents report that prior to their child’s surgery they

were extremely concerned about items pertaining to their child’s Physical Appearance;

very concerned about items related to Back Pain; and somewhat concerned about

Health, Psychosocial and Physical Functional consequences of scoliosis.

(See Table 6.2. & Figure 6.2.)

85

Table 6.2 Parents’ Concerns Regarding Scoliosis Mean scores (std. dev); Ranges All Parents

(n=53) Parents of Girls

(n=46) Parents of Boys

(n=7) Index of All Concerns

66.56 (16.36) 26.67 – 94.29

68.07 (15.48) 35.24 – 94.29

56.60 (19.72) 26.67 – 83.81

Index of Presenting Concerns

63.40 (20.14) 17.50 – 100

66.20 (18.08) 17.50 - 100

45.00 (24.71) 17.50 – 87.50

Index of Future Concerns

68.51 (17.40) 32.31 – 96.92

69.23 (16.87) 38.46 – 96.92

63.74 (21.44) 32.31 – 89.23

Appearance Concerns

84.53 (16.24) 20.00 - 100

85.87 (16.27) 20.00 – 100

75.71 (13.97) 50.00 – 90.00

Pain Concerns

71.07 (19.78) 20.00 - 100

73.33 (18.49) 20.00 – 100

56.19 (23.05) 33.33 – 100

Physical Function Concerns

62.11 (22.00) 8.00 - 100

64.17 (20.24) 8.00 – 96.00

48.57 (29.61) 12.00 – 100

Psychosocial Concerns

63.40 (21.45) 8.57 – 100

64.72 (20.31) 14.29 – 100

54.69 (28.16) 8.57 – 88.57

Health Concerns

65.28 (21.20) 20 - 100

65.98 (21.77) 20.00 - 100

60.71 (17.66) 30.00 – 75.00

Parents' Concerns Regarding Scoliosis

0.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

All Concerns PresentingConcerns

FutureConcerns

AppearanceConcerns

PainConcerns

FunctionConcerns

PsychosocialConcerns

HealthConcerns

Mea

n In

dex

Scor

es

All ParentsGirls' ParentsBoys' Parents

Figure 6.2. Parents’ mean level of concerns overall and by domain, with standard deviations.

86

Analyzed by individual items, parents also reported a wide range of concerns for most of

these items. The following list of items represents parents’ greatest concerns about their

child’s scoliosis (mean score out of maximum of 5; standard deviation) with the

percentage (number) of parents reporting that they were either “extremely concerned” or

“very concerned” about the effect of scoliosis on these items.

i. Future physical appearance (4.36; 0.81): 91% (48/53) of parents reported that they

were either “extremely concerned” or “very concerned” about the effect of scoliosis

on their child’s future physical appearance;

ii. Risk of future back pain (4.17; 0.98): 77% (41/53) of parents were either “extremely

concerned” or “very concerned” about the effect of scoliosis on their child’s future risk

of back pain;

iii. Present physical appearance (4.09; 1.1): 83% (44/53) of parents were either

“extremely concerned” or “very concerned” about the effect of scoliosis on their

child’s physical appearance at the time prior to surgery;

iv. Emotional well-being (present and future) (4.0; 1.23): 74% (39/53) of parents;

v. Future self esteem (3.96; 1.1): 72% (38/53) of parents;

vi. General health (3.92; 1.23): 64% (34/53) of parents;

vii. Future physical activities (3.91; 1.1): 72% (38/53) of parents;

viii. Risk of lung and heart problems (3.79; 1.52): 72% (38/53) of parents;

ix. Present self esteem (3.51; 1.4): 57% (30/53) of parents.

x. future recreation (30/53 [57%])

xi. having to wear a brace (30/53 [57%])

In addition, 24/45 (53%) parents of girls with scoliosis were “very concerned” or

“extremely concerned” about the effect of scoliosis on their daughter’s prospects of

future pregnancy and childbirth. About 1/3 of the parents surveyed were also “very

87

concerned” or “extremely concerned” about the effects of scoliosis on their child’s

prospects of employment and careers, future relationships and marriage, and the

possibility of a shorter life expectancy.

Overall, parents were least concerned about the effects of scoliosis on their child’s future

sexual function, and present friendships and relationships with 24/53 (45%) and 22/53

(42%) reporting that they were either “hardly” or “not at all concerned” about these

issues. However, 11/53 (21%) parents did report feeling “very concerned” or “extremely

concerned” about these issues.

On average, parents’ of girls with scoliosis had similar types of concerns as did parents’

of sons with scoliosis, with nine of the top ten concerns being the same, but in slightly

different order of priorities. However, parents of girls had greater concerns about the

effect of scoliosis on their daughters in all items than did parents of boys, with the

exception of with the exception of the items pertaining to future health, life expectancy,

and future lung and heart problems. Parents’ of boys with scoliosis reported their

highest concern about the risks of scoliosis on the future general health of their sons,

and also were more concerned about the potential effects of scoliosis on the longevity of

their sons than parents of girls with scoliosis.

6.1.3 Parents’ Perception of their Child’s Concerns Regarding Scoliosis

Parents also rated what they thought their child’s level of concern for each of the items

would be, blinded to their child’s responses. These are described and compared to the

patients’ responses in Section 6.1.5.

88

6.1.4 Surgeons’ Concerns Regarding Scoliosis

Surgeons were asked to imagine that they had a child with adolescent onset idiopathic

scoliosis that needed surgery, and to report what their “concerns” about their child’s

scoliosis might be, both if this was a daughter and son, respectively.

In general, surgeons had fewer and smaller concerns. Surgeons did not share the same

concerns among themselves. On average (by domain), surgeons were somewhat

concerned about physical appearance, slightly concerned about psychosocial issues

and pain, but were hardly concerned about the functional or health consequences of

scoliosis. The surgeons’ concerns for their daughter were the same as for their son, but

marginally higher.

(See Table 6.3)

Table 6.3 Surgeons’ Concerns Regarding Scoliosis All Surgeons’

Concerns for Daughters (n = 24)

All Surgeons’ Concerns for Sons (n = 24)

HSC Surgeons’ Concerns for

Daughters (n=4) Index of

All Concerns 33.93 (10.91) 6.80 – 52.38

28.23 (12.13) 6.80 – 51.02

22.45 (10.95) 6.80 – 31.97

Index of Presenting Concerns

34.97 (11.63) 5.36 - 55.36

29.91 (13.11) 5.36 – 55.36

25.45 (13.71) 5.00 – 36.00

Index of Future Concerns

33.29 (11.26) 7.69 – 50.55

27.20 (12.39) 5.49 – 48.35

20.60 (9.76) 7.69 – 29.67

Appearance Concerns

50.60 (14.12) 14.29 – 71.43

47.32 (14.73) 14.29 – 71.43

39.29 (17.00) 14.29 – 50.00

Pain Concerns

33.53 (16.16) 0 – 61.90

27.68 (16.24) 0 – 61.90

21.43 (14.81) 0 – 33.33

Physical Function Concerns

27.50 (12.66) 2.86 – 57.14

22.50 (13.84) 0 – 57.14

15.71 (9.76) 2.86 – 25.71

Psychosocial Concerns

37.41 (11.46) 8.16 – 53.06

32.78 (15.26) 0 – 53.06

28.06 (13.37) 8.16 – 36.73

Health Concerns

27.83 (15.80) 0 – 60.71

18.30 (13.16) 0 – 42.86

13.39 (11.80) 0 – 28.57

89

Analyzed by individual items, surgeons’ biggest concerns about their hypothetical child’s

scoliosis would have been about the effect of scoliosis on their child’s: (mean score out

of maximum of 5 for daughter; son respectively)

i. Future physical appearance (3.71; 3.50)

ii. Present physical appearance (3.38; 3.13)

iii. Future Emotional well-being (3.33; 3.07)

iv. Present Self esteem (3.25; 3.07)

v. Present Emotional well-being (3.21; 3.00)

vi. Future Self-esteem (3.17; 3.00)

Surgeons from the Hospital for Sick Children had the identical order of concerns as other

Canadian surgeons, but on average had consistently lower concerns for each of the

domains and items. All four surgeons from The Hospital for Sick Children listed the

identical level of concerns for their hypothetical daughters and sons with scoliosis for

each item, except for the item on pregnancy and childbirth.

90

6.1.5 Comparison of Patients’, Parents’ and Surgeons’ Concerns regarding

Scoliosis

Repeated measures ANOVA and paired T tests were used to make the respective

comparisons.

Table 6.4 Comparison of Concerns Regarding Scoliosis: means (std.dev) & ranges

Patients Parents Parents’ perception of

their child

Surgeons (HSC)

Index of All Concerns

51.01 (20.79)

2.86 – 91.43

66.56 (16.36)

26.67 – 94.29

51.43 (22.55)

0 - 96.19

22.45 (10.95)

6.80 – 31.97

Index of Presenting Concerns

52.09 (21.15)

0 – 90.00

63.40 (20.14)

18.00 – 100

55.14 (25.81)

0 – 100

25.45 (13.71)

5.00 – 36.00

Index of Future Concerns

50.35 (24.13)

5.00 – 92.00

68.51 (17.40)

32.31 – 96.92

49.14 (23.03)

0 – 93.85

20.60 (9.76)

7.69 – 29.67

Appearance

Concerns

69.27 (24.10)

0 - 100

84.53 (16.24)

20.00 - 100

74.91 (25.01)

0 - 100

39.29 (17.00)

14.29 – 50.00

Pain

Concerns

65.45 (21.62)

0 - 100

71.07 (19.78)

20.00 - 100

61.89 (28.57)

0 – 100

21.43 (14.81)

0 – 33.33

Physical Function

Concerns

50.91 (22.14)

0 – 96.00

62.11 (22.00)

8.00 - 100

49.89 (25.15)

0 – 100

15.71 (9.76)

2.86 – 25.71

Psychosocial

Concerns

43.27 (27.07)

0 - 100

63.40 (21.45)

8.57 – 100

46.95 (27.32)

0 – 100

28.06 (13.37)

8.16 – 36.73

Health

Concerns

44.73 (28.14)

0 - 100

65.28 (21.20)

20 - 100

41.60 (26.18)

0 – 95.00

13.39 (11.80)

0 – 28.57

91

Patients', Parents' & Surgeons' Concerns

.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

All Concerns PresentingConcerns

FutureConcerns

AppearanceConcerns

Pain Concerns FunctionConcerns

PsychosocialConcerns

HealthConcerns

Mea

n In

dex

Scor

es

Child

Parent

Surgeon

Patient

vs Parent

- 16.21

p=0.000

- 11.89

p=0.001

-18.87

p=0.000

- 15.28

p=0.000

- 5.66

p=0.068

- 12.38

p=0.001

- 20.65

p=0.000

- 21.64

p=0.000

MeanDiff Sig. (2-tailed)

Patient vs

Surgeon

34.38

p=0.000

31.14

p=0.000

36.38

p=0.000

34.07

p=0.000

46.07

p=0.000

41.25

p=0.000

20.72

p=0.000

41.09

p=0.000

MeanDiff Sig. (2-tailed)

Parent vs

Surgeon

48.73

p=0.000

41.23

p=0.000

53.35

p=0.000

48.43

p=0.000

50.23

p=0.000

51.60

p=0.000

39.59

p=0.000

60.17

p=0.000

MeanDiff Sig. (2-tailed)

Figure 6.3 The mean index of concerns with 95% confidence intervals, overall and for each of the 5 domains are depicted for patients, their parents and their surgeons (HSC). The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.

Hypothesis 1: Patients’ (pre-treatment) concerns about scoliosis are different from their

Parents’ concerns about scoliosis. (See Table 6.4 & Figure 6.3)

Parents were consistently more concerned than their children across all domains.

These differences were all statistically significant (p < 0.001), with the exception of the

pain domain (p = 0.068). The parents’ concerns for their children’s back pain at the time,

was not significantly different from their child’s concerns for back pain at the time.

92

However, parents had significantly higher concerns than their children, regarding the risk

for future back pain (p< 0.001).

Hypothesis 2: Patients’ and Parents’ (pre-treatment) concerns about scoliosis are

different from Surgeons’ concerns. (See Table 6.4 & Figure 6.3)

Patients’, and their Parents’ concerns were compared with the concerns of their

respective Surgeon (one of four surgeons at The Hospital for Sick Children) using the

appropriate gendered (daughter or son) responses of the surgeon. This matched

comparison used a repeated measures analysis of variance and paired t-tests.

Therefore, the same surgeon’s responses was matched to more than one pair of

patients and parents, i.e., to every patient that they treated. Additionally, analysis of

variance (ANOVA) and Student t-tests were used to compare the means scores of the

various indices of concerns of patients and parents with all Canadian surgeons’

concerns.

Parents and children were consistently more concerned about all aspects of scoliosis

than their surgeons (all comparisons had p values < 0.001). See Figure 6.3.

Hypothesis 3: Patients’ (pre-treatment) concerns about scoliosis are different from their

Parents’ perception of their child’s concerns. (See Table 6.4 & Figure 6.4)

Patients were matched with their parents. Repeated measures analysis of variance and

paired t- tests were used to compare mean scores of (i) Patients, (ii) Parents, and (iii)

Parents’ perception of their child’s concerns.

93

Parents’ perception of their children’s concerns, were remarkably similar to their

children’s actual concerns. The mean differences were all clinically and statistically

insignificant.

Patients' Concerns versus Parents' Perception of Child's Concerns

.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

All Concerns PresentingConcerns

FutureConcerns

AppearanceConcerns

PainConcerns

FunctionConcerns

PsychosocialConcerns

HealthConcerns

Mea

n In

dex

PatientParent-Child

Patients’

vs Parents’

perception of child

-1.08

0.75

-3.63

0.325

0.49

0.89

-5.66

0.155

3.52

0.363

-0.15

0.966

-4.2

0.321

2.075

0.620

Mean Diff.

Sig (2-tailed)

Figure 6.4 The mean index of concerns with 95% confidence intervals for All, Presenting, Future concerns, & for each of the 5 domains are depicted for Patients’ and Parent’s perception of their child’s concerns. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.

94

6.2 Concerns Regarding Surgery for Scoliosis (Undesirable & Adverse Events)

Aim 2 of the thesis was to describe and compare Patients’, Parents’ and Parents’

perception of their child’s concerns (worries) regarding surgery for correction of scoliosis.

Concerns about undesirable outcomes or adverse events that might arise from surgery

were rated on 6-point ordinal rating scale from “Not at all concerned” (0) to “Extremely

concerned” (5) for each of these events. The events were categorized as short-term

problems (11 items) or long-term adverse outcomes (13 items) occurring or lasting

beyond one year after surgery. Means and standard deviations of concerns (prior to

surgery) were determined for (i) Patients, (ii) Parents and (iii) Parents’ perception of their

child’s concerns regarding surgery for scoliosis (See Table 5.). Repeated measures

analysis of variance and paired t-tests were used to compare mean scores of (i)

Patients, (ii) Parents, and (iii) Parents’ perception of their child’s concerns.

(See Tables 6.5, 6.6, 6.7 & 6.8; Figures 6.5, 6.6, 6.7, & 6.8)

6.2.1 Patients’ Concerns Regarding Surgery for Scoliosis

Patients reported a wide range in their overall level of prior concerns about surgery for

scoliosis. The magnitude of overall concern as measured by the mean Index of All

Concerns was 51.94 (SD: 22.12). Patients’ level of concern for short-term problems, as

measured by the Index of Concerns for Short-Term Undesirable Events (52.63;

SD:22.14) was similar to their level of concern for long-term adverse outcomes as

measured by the Index of Concerns for Long-Term Undesirable Events (51.36;

SD:24.91). (See Table 6.7)

Analyzed by individual items, patients reported a wide range of concerns, from “not at all

concerned” to “extremely concerned” (0 – 5) for all short and long-term undesirable

events. Patients’ greatest short-term concerns related to their fear of pain after surgery

95

with 35 of 55 patients reporting that prior to surgery they had been “very concerned” or

“extremely concerned” about this. 30 patients reported that they had been “very

concerned” or “extremely concerned” about the possibility of an unpleasant scar. About

half the patients were “very concerned” or “extremely concerned” about the risk of

experiencing back stiffness and a restriction of physical activities both in the short and

long-term, and the risk of hardware related problems in the future. 23 of 55 patients had

been “very concerned” or “extremely concerned” about the risk of paralysis. A similar

number of patients were concerned about the possibility of an unsatisfactory correction

of their deformity and the need for additional surgery in the future. (See Table 6.5)

Table 6.5 Patients’ Concerns Regarding Surgery (Ranked in descending order)

Short-Term Undesirable Events

Mean (Std. Dev.)

Range

# of Ratings of ‘4’ or ‘5’ (%)

i. Pain after surgery 3.75 (1.24) 0 - 5 35 (64%) ii. Unpleasant scar 3.44 (1.49) 0 – 5 30 (55%) iii. Restricted physical activities 3.20 (1.22) 0 – 5 23 (42% iv. Back stiffness 3.15 (1.31) 0 – 5 23 (42%) v. Paralysis (temporary) 2.73 (1.80) 0 – 5 23 (42%) vi. Infection (early) 2.45 (1.62) 0 – 5 15 (27%) vii. Sensory changes or muscle weakness 2.44 (1.50) 0 – 5 13 (24%) viii. Death 2.33 (2.01) 0 – 5 17 (31%) ix. Risks of blood transfusion 1.93 (1.61) 0 – 5 12 (22%) x. Abdominal pain, nausea & vomiting 1.78 (1.45) 0 – 5 8 (15%) xi. Loss of privacy & independence 1.76 (1.39) 0 - 5 7 (13%)

Long-Term Undesirable Events

Mean (Std.Dev.)

Range

# of Ratings of ‘4’ or ‘5’

i. Unpleasant scar 3.15 (1.63) 0 - 5 25 (47%) ii. Rods/hooks causing problems 3.07 (1.53) 0 – 5 24 (44%) iii. Back stiffness (lacking flexibility) 3.04 (1.37) 0 – 5 22 (40%) iv. Restricted physical activities 2.93 (1.24) 0 – 5 18 (33%) v. Partial/unsatisfactory correction 2.85 (1.53) 0 – 5 20 (37%) vi. Need for another operation 2.84 (1.85) 0 – 5 22 (40%) vii. Back pain in the future 2.78 (1.46) 0 – 5 17 (31%) viii. Spine does not fuse properly 2.69 (1.65) 0 – 5 19 (35%) ix. Deformity might recur or worsen 2.45 (1,77) 0 – 5 20 (37%) x. Paralysis (permanent) 2.31 (1.97) 0 – 5 20 (37%) xi. Sensory loss or muscle weakness (perm) 2.07 (1.60) 0 - 5 13 (24%) xii. Infection (late) 1.75 (.152) 0 – 5 11 (20%) xiii. Late risks of blood transfusion 1.56 (1.68) 0 - 5 9 (16%)

96

6.2.2 Parents’ Concerns Regarding Surgery for Scoliosis

Parents also reported a wide range in their overall level of concern about their child’s

scoliosis prior to surgery. In general, parents had greater concerns, with a larger

number of parents expressing a greater number of more serious concerns. The

magnitude of overall concern as measured by the mean Index of All Concerns was

64.81 (SD:21.02). Parents’ level of concern for short-term problems, as measured by

the Index of Concerns for Short-Term Undesirable Events (69.78; SD:19.92) was

somewhat higher than their level of concern for long-term adverse outcomes as

measured by the Index of Concerns for Long-Term Undesirable Events (60.1;

SD:24.28). (See Table 6.7)

Analyzed by item, parents reported the full range of concerns (0 – 5) for all except for

two items, post-operative pain and unpleasant scarring, respectively. More than half of

the parents reported that prior to surgery they had been “extremely concerned” or “very

concerned” about the post-operative pain that their child would experience, the risk of

back stiffness, risk of paralysis, an unpleasant scar, hardware problems, risk of future

back pain, the risk of death, restricted physical activities, and risk of post-operative

infection. (See Table 6.6)

97

Table 6.6 Parents’ Concerns Regarding Surgery (Ranked in descending order) Short-Term

Undesirable Events Mean

(Std. Dev.)

Range# of Ratings of

‘4’ or ‘5’ (%) i. Pain after surgery 4.45 (0.67) 3 – 5 48 (91%) ii. Back stiffness 3.98 (1.07) 1 - 5 39 (74%) iii. Paralysis (temporary) 3.91 (1.48) 0 - 5 35 (66%) iv. Unpleasant scar 3.81 (1.14) 1 - 5 34 (64%) v. Death 3.60 (1.62) 0 - 5 30 (57%) vi. Restricted physical activities 3.57 (1.15) 0 – 5 29 (55%) vii. Infection (early) 3.45 (1.51) 0 – 5 29 (55%) viii. Sensory changes or muscle weakness 3.23 (1.38) 0 – 5 25 (47%) ix. Risks of blood transfusion 2.94 (1.91) 0 – 5 25 (47%) x. Loss of privacy & independence 2.75 (1.67) 0 – 5 19 (36%) xi. Abdominal pain, nausea & vomiting 2.73 (1.65) 0 – 5 21 (40%)

Long-Term Undesirable Events

Mean (Std.Dev.)

Range

# of Ratings of ‘4’ or ‘5’ (%)

i. Rods/hooks causing problems 3.57 (1.56) 0 - 5 32 (60%) ii. Back pain in the future 3.55 (1.31) 0 – 5 31 (58%) iii. Partial/unsatisfactory correction 3.28 (1.41) 0 – 5 25 (47%) iv. Back stiffness (lacking flexibility) 3.28 (1.25) 0 – 5 24 (45%) v. Unpleasant scar 3.11 (1.40) 0 – 5 21 (40%) vi. Spine does not fuse properly 3.06 (1.63) 0 – 5 26 (49%) vii. Need for another operation 3.06 (1.78) 0 – 5 23 (43%) viii. Paralysis (permanent) 3.04 (2.05) 0 – 5 29 (55%) ix. Deformity might recur or worsen 3.00 (1.61) 0 – 5 24 (45%) x. Restricted physical activities 2.96 (1.32) 0 – 5 18 (34%) xi. Sensory loss or muscle weakness (perm) 2.77 (1.79) 0 – 5 20 (38%) xii. Infection (late) 2.58 (1.73) 0 – 5 19 (36%) xiii. Late risks of blood transfusion 2.13 (1.94) 0 – 5 16 (30%)

6.2.3 Parents’ Perception of their Child’s Concerns Regarding Surgery

Parents also rated what they thought their child’s level of concern for each of the items

would be, blinded to their child’s responses. Based on their perception of their children’s

responses, the magnitude of overall concern was 49.73 (SD:25.88). Parents’ perception

of their children’s level of concern for short-term problems was 55.91 (SD:24.47), which

was somewhat higher than their perception of their children’s level of concern for long-

term adverse outcomes, 47.35 (SD:26.63). Parents’ perceptions of their children’s

individual concerns are compared to the patients’ responses in Section 6.2.4.

98

6.2.4 Comparison of Patients’, Parents’ and Parents’ Perception of their

Children’s Concerns Regarding Surgery for Scoliosis

Hypothesis 4: Patients’ (pre-treatment) concerns about surgery for scoliosis are

different from their Parents’ (pre-treatment) concerns about surgery for scoliosis.

Overall, parents were more concerned than children about all risks of surgery, including

short-term risks and long-term risks of undesirable outcomes.

(See Table 6.7)

Table 6.7 Patients’ vs Parents’ Overall Concerns Regarding Surgery for Scoliosis Index of Concerns Patients’

Concerns (n=55)

Parents’ Concerns (n = 53)

Mean Difference (p – value)

(n = 53) All

Undesirable Events

51.94 (22.12)

0 – 89.17

64.81 (21.03)

20.00 – 100

- 13.30

p = 0.001 Short Term Undesirable

Events

52.63 (22.14)

0 – 100

69.78 (19.92)

33.00 – 100

- 17.702

p=0.000 Long Term

Undesirable Events

51.35 (24.91)

0 – 95.38

60.61 (24.23)

8.00 – 100

- 9.579

p=0.023 Parents were consistently more concerned than their children about all short-term

adverse events following surgery. These differences were all significant (p ≤ 0.005),

except for concerns related to unpleasant scar (p = 0.084) and restricted activities

(0.064), for which children’s concerns approached that of their parents’. (See Figure 6.5)

99

Patients' vs Parents' Short Terms Concerns of Surgery

0.00

1.00

2.00

3.00

4.00

5.00

Pain

Scar

Stiff

ness

Res

tric

ted

Act

ivity

Early

Infe

ctio

n

Abd

o Pa

in &

Vom

iting

Loss

of

Inde

pend

ence

Blo

odTr

ansf

usio

n

Wea

knes

s or

Sens

ory

Loss

Tem

pora

ryPa

raly

sis

Dea

th

Mag

nitu

de o

f Con

cern

ChildParent

Patient

vs Parent

- 0.72

0.000

- 0.36

0.084

- 0.83

0.001

-0.42

0.064

- 1.02

0.001

-0.98

0.001

- 1.06

0.001

- 1.06

0.002

- 0.85 0.002

- 1.21 0.000

- 1.28 0.000

Mean Diff. Sig. (2-tailed)

Figure 6.5 Comparison of Patients’ with Parents’ short-term concerns regarding surgery for scoliosis. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.

Parents were consistently more concerned than their children about all long-term

adverse events following surgery. However, these differences were smaller and only the

difference in concerns for late infection reached an adjusted (for multiple comparisons)

threshold of statistical significance (p<0.005). (See Figure 6.6)

100

Patients' vs Parents' Long-term Concerns of Surgery

0.00

1.00

2.00

3.00

4.00

5.00Fu

ture

Bac

k Pa

in

Scar

Poor

Cor

rect

ion

Bac

k St

iffne

ss

Res

tric

ted

Act

iviti

es

Late

Infe

ctio

n

Har

dwar

e Pr

oble

ms

Failu

re o

f Fus

ion

Rec

urre

nt D

efor

mity

Ris

ks o

f Tra

nsfu

sion

Perm

anen

t Sen

sory

Los

s

Perm

anen

t Par

alys

is

Reo

pera

tion

Mag

nitu

de o

f Con

cern

Child

Parent

Patient

vs Parent

- .77

0.008

-.05

0.82

-.43

0.1

-.26

0.3

- .06

0.8

-.87

0.003

- .52

0.08

-.37

0.23

- .57

0.07

- .6

0.06

- .72

0.02

-.77

0.02

-.23

0.48

Mean Diff.

Sig. (2-tailed)

Figure 6.6 Comparison of Patients’ with Parents’ long-term concerns regarding surgery for scoliosis.The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.

101

Hypothesis 5: Patients’ (pre-treatment) concerns about surgery for scoliosis are

different from their Parents’ perception of their child’s (pre-treatment) concerns about

surgery for scoliosis. Patients were matched with their parents. Repeated measures

analysis of variance and paired t- tests were used to compare mean scores of (i)

Patients, (ii) Parents, and (iii) Parents’ perception of their child’s concerns.

Although parents were far more concerned than their children regarding the risks of

undesirable events following surgery, they reported that they believed that their children

had lower level of concerns than them. When compared with their children’s responses,

parents’ perceptions of their children’s concerns were similar to their children’s actual

concerns. Overall, the mean differences between patients’ and their parents’ perception

of their responses were small (clinically insignificant) and statistically insignificant.

(See Table 6.8)

Table 6.8 Patients’ Concerns vs Parents’ Perception of Child’s Concerns about Surgery Index of Concerns Patients’

Concerns (n=55)

Parents’ Perception of Child’s Concerns

(n = 53)

Mean Difference (p – value)

(n = 53) All

Undesirable Events

51.94 (22.12)

0 – 89.17

49.73 (25.88)

0 – 100

1.30

p=0.785 Short Term Undesirable

Events

52.63 (22.14)

0 – 100

55.91 (24.47)

7.27 - 100

- 5.49

p=0.207 Long Term

Undesirable Events

51.35 (24.91)

0 – 95.38

47.35 (26.63)

0 – 100

2.26

p=0.644

102

Among the concerns for short-term risks of undesirable events, parents were perceptive

of most of their children’s concerns. They only overestimated their children’s concerns

for post-operative pain, and loss of privacy and independence. (See Figure 6.7)

Patients' vs Parents' Perception of Child's Short Terms Concerns of Surgery

0.00

1.00

2.00

3.00

4.00

5.00

Pain

Scar

Stiff

ness

Res

tric

ted

Act

ivity

Early

Infe

ctio

n

Abd

o Pa

in &

Vom

iting

Loss

of

Inde

pend

ence

Blo

odTr

ansf

usio

n

Wea

knes

s or

Sens

ory

Loss

Tem

pora

ryPa

raly

sis

Dea

th

Mag

nitu

de o

f Con

cern

Child

Parent-Child

Patient

vs Parent- Child

- 0.5

0.013

- 0.38

0.063

- 0.08

0.75

-0.15

0.57

0.27

0.43

-0.29

0.35

- 0.77

0.02

- 0.29

0.38

- 0.19 0.54

- 0.38 0.31

- 0.27 0.47

Mean Diff. Sig. (2-tailed)

Figure 6.7 Comparison of Patients’ with Parents’ perceptions of their Children’s short-term concerns regarding surgery for scoliosis. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.

103

Regarding concerns for long-term adverse effects or undesirable outcomes, parents’

perceptions of what their children’s concerns might be were also very similar to their

children’s responses, with no significant differences in the mean rating scores for any of

the items. (See Figure 6.8)

Long-term Concerns of SurgeryPatients' vs Parents' Perception of Child's Concerns

0.00

1.00

2.00

3.00

4.00

5.00

Futu

re B

ack

Pain

Scar

Poor

Cor

rect

ion

Bac

k St

iffne

ss

Res

tric

ted

Act

iviti

es

Late

Infe

ctio

n

Har

dwar

e Pr

oble

ms

Failu

re o

f Fus

ion

Rec

urre

nt D

efor

mity

Ris

ks o

f Tra

nsfu

sion

Perm

anen

t Sen

sory

Los

s

Perm

anen

t Par

alys

is

Reo

pera

tion

Mag

nitu

de o

f Con

cern

Child

Parent-Child

Patient vs

Parent- Child

-0.38

0.20

-0.02

0.93

-0.15

0.61

-0.15

0.63

-0.06

0.80

-0.10

0.75

-0.13

0.69

-0.47

0.17

-0.15

0.67

-0.21

0.5

-0.08

0.77

-0.04

0.91

-0.15

0.67

Mean Diff.

Sig. (2-tailed)

Figure 6.8 Comparison of Patients’ with Parents’ perceptions of their Children’s long-term concerns regarding surgery for scoliosis. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.

104

6.3 Summary

In this chapter, we explored the concerns that patients and parents experience both

about the diagnosis of scoliosis and the surgical treatment for scoliosis. We compared

patients’ concerns with those of their parents as well as with surgeons who treat

scoliosis. We were also interested in determining whether parents were aware of their

child’s concerns.

Patients and their parents reported a wide range in their levels of concern for different

issues regarding scoliosis. A larger proportion of parents reported a greater number of

more serious concerns than their children overall about the diagnosis of scoliosis,

including their concerns for perceived consequences of scoliosis in the present and in

the future. Surgeons, when asked to assume the role of a parent of a child with

scoliosis, reported consistently fewer and far less serious concerns than either patients

or their parents in all domains. The effect of scoliosis on future physical appearance

was the highest concern expressed by all three groups. The risk of back pain was the

next highest concern for patients and their parents, while surgeons’ next highest

concerns related to psychosocial issues.

Parents also expressed a larger number of and more serious concerns than their

children about the risks of surgery for scoliosis. When asked to report what they

thought their children’s responses might be, parents seemed to recognize that their

children’s responses would be different from theirs, but they were also remarkably

perceptive of the direction as well as the magnitude of these differences.

105

Chapter 7 Desires (Wishes) And Goals Of Surgery

Aim 3 of this thesis was to describe and compare Patients’ and Parents’ desires

(wishes) of the surgical treatment of scoliosis and to describe Surgeons’ goals of surgery

for scoliosis. Desires were defined as wishes regarding medical care. In the context of

surgery for scoliosis, desires referred to the perception that a given event or outcome

was wanted or wished for by patients and their parents. Desires of patients (and

parents) corresponded to the Goals of treatment from the surgeons’ perspective.

The measurement of patients’ desires, parents’ desires and surgeons’ goals were

operationalized in two ways. First, the respondents (patients and their parents) were

asked to report how much he/she wished or desired that surgery would accomplish a

particular objective or goal, rated on a 6-point ordinal scale from “Not at all desired” (0)

to “Very strongly desired” (5). This provided an estimate of the strength or magnitude of

desire for each of the reasons for surgery. Second, patients’ and parents’ desires

(wishes) of surgery were measured by asking respondents to rank their top 10 wishes or

desires (from a list of 21 items) in order of “most to least important reason” for

undergoing surgery.

Surgeons were asked to report how often each item was a reason for recommending

surgery to their patients on a 7-point rating scale from “Never” (0) to “Always “(6). This

provided an estimate of the frequency of each individual item as an explicit goal of

surgery from each surgeon’s perspective. Surgeons were also asked to rank their goals

in order of “most to least important reason”.

106

7.1 Patients’ Desires (wishes) of Surgery for Scoliosis

Patients reported a wide range (0 – 5) in the strength of their desires for each of the

goals of surgery. The magnitude of the overall strength of desires as measured by the

Index of all Desires of Surgery (out of a maximum 100) was 46.72 (std.dev:18.97).

Patients’ desires (means; std. dev.) for immediate goals as measured by the Index of

Immediate Desires of Surgery (43.36; 19.39) were not significantly less than their

desires for longer term goals measured by the Index of Future Desires of Surgery

(48.78; 20.85). The strongest desire was by far in the domain pertaining to physical

appearance (80.73; 22.01). (See Figure 7.1)

Strength of Desires for Goals of Surgery

0.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

All G

oals

Pres

ent

Goa

ls

Futu

re G

oals

Appe

aran

ceG

oals

Pain

Goa

ls

Func

tiona

lG

oals

Psyc

hoso

cial

Goa

ls

Hea

lth G

oals

Mea

n In

dex

All PatientsGirlsBoys

Figure 7.1 Patients’ mean strength of desires overall & by domain, with std. deviations.

The boys in this cohort shared similar desires for goals as the girls, although the strength

of their desires was slightly higher for physical functional goals than girls.

Based on the strength of patients’ desires for each specific item/goal (means; std. dev.),

“prevent worsening of future physical appearance” (4.5; 1.08), “prevent future back pain”

107

(3.98; 1.35), “improve current physical appearance” (3.80; 1.38), “prevent future general

health problems” (3.33; 1.70), and “prevent restriction of future physical activities” (3.02;

1.56) were the five strongest rated desires of surgery in aggregate. (See Table 7.1)

This was corroborated by the order of ranking of the most important reasons (goals) for

surgery listed by patients. Overall, “prevent worsening of future physical appearance”

was ranked by patients as the most important reason for undergoing surgery, with 43 of

55 patients (78%) reporting this wish among their top 5 reasons. This was followed by

“improve current physical appearance” and “prevent future back pain” both ranked by 37

of 55 patients (67%) among their top five reasons. However, to “improve current

physical appearance” was ranked as the most important reason by the most number of

patients (17/55; 30%), followed by 8/55 (15%) ranking “prevent future lung and heart

problems” and 6/55 (11%) choosing “prevent worsening of future physical appearance”

as their number 1 reason for surgery. (See Table 7.2)

108

Table 7.1 Strength of Patients’ Desires for Goals of Surgery (ranked in descending order)

GOALS OF SURGERY

MEAN (SD) Range

# of Ratings of “4” or “5”* (%)

1. Prevent worsening of Future physical appearance

4.27 (1.08) 0 – 5 47 (85%)

2. Prevent future back pain 3.98 (1.35)

0 – 5 41 (75%) 3. Improve current physical

appearance 3.80 (1.38)

0 – 5 37 (67%) 4. Prevent future problems with

general health 3.33 (1.70)

0 – 5 33 (60%) 5. Prevent restriction of future

physical activities 3.02 (1.56)

0 – 5 24 (44%) 6. Prevent future lung/heart

problems 2.87 (1.92)

0 – 5 28 (51%) 7. Prevent restriction of future

sport/recreation 2.78 (1.62)

0 – 5 20 (36%)

8. Decrease current back pain 2.71 (2.00)

0 – 5 23 (42%) 9. Prevent loss of future self-

esteem 2.33 (1.89)

0 – 5 21 (38%)

10. Improve current self-esteem 2.29 (1.58)

0 – 5 15 (27%) 11. Improve current physical

activities 2.00 (1.58)

0 – 5 11 (20%) 12. Improve participation in current

sport/recreation 2.00 (1.56)

0 – 5 11 (20%)

13. Prevent early mortality 1.87 (1.91)

0 – 5 16 (29%)

14. Eliminate need to wear a brace 1.73 (2.29)

0 – 5 18 (33%) 15. Improve current emotional well-

being 1.72 (1.69)

0 – 5 10 (18%) 16. Prevent problems with

pregnancy or childbirth 1.64 (1.73)

0 – 5 9 (16%) 17. Prevent problems with future

emotional well-being 1.62 (1.64)

0 – 5 10 (18%) 18. Improve employment and

career prospects 1.56 (1.58)

0 – 5 7 (13%) 19. Prevent problems with future

relationships/marriage 1.35 (1.60)

0 – 5 7 (13%) 20. Improve current

friendships/relationships 1.13 (1.61)

0 – 5 7 (13%) 21. Prevent problems with sexual

function 1.09 (1.60)

0 – 5 8 (13%) * Number of patients (%) who “strongly desired” or “very strongly desired” this goal of surgery. Patients’ five strongest desires of surgery are in bold print.

109

Table 7.2 Patients’ Reasons for Surgery Ranked in Descending Order of Importance

REASONS FOR SURGERY

Mean * (SD)

Range*

# of times ranked 1

(10 points)(%)

# of times

ranked 2 (9 points)

(%)

# of times

ranked in top 3

goals (%)

# of times

ranked in top 5

goals (%)1. Prevent worsening of

future physical appearance7.11 (2.57)

0 -10 6 (11%) 15 (27%) 30 (55%) 43 (78%) 2. Improve current physical

appearance 6.69 (3.46)

0 – 10 17 (31%) 7 (13%) 29 (53%) 37 (67%)

3. Prevent future back pain 6.17 (2.93)

0 – 10 5 (9%) 6 (11%) 20 (36%) 37 (67%) 4. Prevent future lung/heart

problems 4.65 (3.93)

0 – 10 8 (15%) 6 (11%) 19 (35%) 23 (42%) 5. Prevent future general

health problems 4.31 (3.44)

0 – 10 3 7 (13%) 13 (24%) 21 (38%) 6. Decrease current back

pain 4.19 (3.98)

0 – 10 5 (9%) 6 (11%) 17 (31%) 24 (44%) 7. Prevent future restriction

of physical activities 3.31 (2.88)

0 -10 1 (2%) 0 3 (6%) 15 (27%) 8. Prevent future restriction

of participation in sport/recreation

2.57 (3.01) 0 – 10 1 (2%) 2 (4%) 3 (6%) 12 (22%)

9. Improve current self-esteem

2.52 (3.08) 0 – 9 0 1 (2%) 6 (11%) 13 (24%)

10. To eliminate need to wear a brace

2.46 (3.87) 0 -10 6 (11%) 1 (2%) 11 (20%) 15 (27%)

11. Prevent early mortality 1.5 (2.6)

0 -10 1 (2%) 0 3 (6%) 5 (9%) 12. Prevent loss of future self-

esteem 1.28 (2.33)

0 – 9 0 1 (2%) 2 (4%) 5 (9%) 13. Prevent problems with

pregnancy or childbirth 1.2 (2.12)

0 – 9 0 1 (2%) 1 (2%) 3 (6%) 14. To improve current

emotional well-being 1.13 (2.27)

0 -9 0 1 (2%) 2 (4%) 4 (7%) 15. Prevent problems with future

emotional well-being 1.07 (1.99)

0 – 8 0 0 1 (2%) 4 (7%) 16. Improve current physical

activities 0.85 (1.76)

0 – 8) 0 0 1 (2%) 1 (2%) 17. Improve current participation

in sport/recreation 0.85 (2.08)

0 – 10 1 (2%) 0 1 (2%) 3 (6%) 18. Prevent problems with future

relationships/marriage 0.52 (1.49)

0 – 7 0 0 0 1 (2%) 19. Improve employment and

career prospects 0.43 (1.02)

0 – 4 0 0 0 0 20. Improve current

friendships/relationships 0.35 (1.08)

0 – 5 0 0 0 0 21. Prevent problems with

sexual function 0.35 (1.36)

0 – 9 0 1 (2%) 1 (2%) 1 (2%) * Goal ranked # 1 scored 10 points; # 2 scored 9 points, ……….. # 10 scored 1 point; goals ranked below # 10 were scored 0. Top 10 reasons are highlighted in bold print.

110

7.2 Parents’ Desires (wishes) of Surgery for Scoliosis

Parents reported a wide range (0 – 5) in the strength of their desires for all of the goals

of surgery except those pertaining to physical appearance (2 – 5). The magnitude of the

overall strength of desires as measured by the Index of all Desires of Surgery (out of a

maximum 100) was 64.91 (std. dev:17.02). Parents’ desires (means; std. dev.) for

immediate goals as measured by the Index of Immediate Desires of Surgery (57.64;

20.77) were significantly less stronger than their desires for longer term goals measured

by the Index of Future Desires of Surgery (69.38;18.43). Parents expressed strong

desires for goals in all domains but the strongest desire was in the domain pertaining to

physical appearance (88.30;12.82). (See Figure 7.2)

Parents' Strength of Desires for Goals of Surgery

0

10

20

30

40

50

60

70

80

90

100

All G

oals

Pres

ent

Goa

ls

Futu

re G

oals

Appe

aran

ceG

oals

Pain

Goa

ls

Func

tiona

lG

oals

Psyc

hoso

cial

Goa

ls

Hea

lth G

oals

Mea

n In

dex

All ParentsGirls' ParentsBoys' parents

Figure 7.2 Parents’ mean strength of desires overall & by domain, with std. deviations.

111

Parents of girls and boys had equally strong desires for goals in the physical appearance

and psychosocial domains. Parents of girls had slightly stronger desires for goals of

surgery in the other domains than did parents of boys.

Based on the strength of parents’ desires for each goal (means; std. dev.), “prevent

worsening of future physical appearance” (4.6; 0.60), “prevent future general health

problems” (4.38; 1.02), “prevent future lung and heart problems” (4.28; 1.31), “prevent

future back pain” (4.25; 1.22), “improve current physical appearance” (4.23; 0.82), were

the five strongest rated desires of surgery in aggregate. Parents reported a larger

number of stronger desires (wishes) from the list of goals of surgery. (See Table 7.3)

This was corroborated by the order of ranking of the most important reasons (goals) for

surgery listed by parents. Based on ranking of the most important reasons (goals) for

surgery, the five most important reasons picked by parents were the same as the top

five most important reasons for surgery reported by patients. Overall, “prevent

worsening of future physical appearance” was ranked by parents as the most important

reason for undergoing surgery, with 42 of 51 parents (82%) reporting this desire among

their top 5 reasons. This was followed by “prevent future lung and heart problems” and

“improve current physical appearance” both ranked by 35 of 51 parents (67%), “prevent

future back pain” ranked by 32 of 51 parents (63%) and “prevent future general health

problems” by 28 of 51 parents (55%), as one of their top five reasons for surgery. (See

Table 7.4)

112

Table 7.3 Strength of Parents’ Desires for Goals of Surgery (ranked in descending order) GOALS OF SURGERY

MEAN (SD) Range

# of Ratings of “4” or “5”* (%)

1. Prevent worsening of future physical appearance

4.60 (0.60) 2 – 5 52 (98%)

2. Prevent future general health problems

4.38 (1.02) 0 – 5 45 (85%)

3. Prevent future lung/heart problems

4.28 (1.31) 0 – 5 44 (83%)

4. Prevent future back pain 4.25 (1.22)

0 -5 45 (85%) 5. Improve current physical

appearance 4.23 (0.82)

2 – 5 42 (79%) 6. Prevent loss of future self-

esteem 3.83 (1.46)

0 – 5 37 (70%) 7. Prevent future restriction of

physical activities 3.74 (1.23)

0 – 5 34 (64%) 8. Prevent problems with future

emotional well-being 3.47 (1.65)

0 -5 29 (55%) 9. Prevent future restriction of

participation in sport/recreation 3.40 (1.23)

0 – 5 25 (47%)

10. Improve current self-esteem 3.23 (1.72)

0 – 5 27 (51%) 11. To improve current emotional

well-being 3.17 (1.68)

0 – 5 27 (51%)

12. Prevent early mortality 3.13 (2.04)

0 – 5 26 (49%) 13. To eliminate need to wear a

brace 3.06 (2.16)

0 – 5 32 (60%)

14. Decrease current back pain 2.85 (2.07)

0 – 5 27 (51%) 15. Prevent problems with

pregnancy or childbirth 2.74 (1.86)

0 – 5 26 (49%) 16. Prevent problems with future

relationships/marriage 2.57 (1.86)

0 – 5 21 (40%) 17. Improve employment and

career prospects 2.52 (1.79)

0 – 5 16 (30%) 18. Improve current physical

activities 2.49 (1.79)

0 - 5 20 (38%) 19. Improve current participation in

sport/recreation 2.43 (1.53)

0 – 5 13 (25%) 20. Prevent problems with sexual

function 2.30 (1.95)

0 – 5 19 (36%) 21. Improve current

friendships/relationships 1.60 (1.63)

0 – 5 10 (19%) * Number of parents (%) who “strongly desired” or “very strongly desired” this goal of surgery. Parents’ five strongest desires of surgery are in bold print.

113

Table 7.4 Parents’ Reasons for Surgery Ranked in Descending Order of Importance

REASONS FOR SURGERY

Mean * (SD)

Range*

# of times ranked 1

(10 points) (%)

# of times ranked 2 (9 points)

(%)

# of times ranked in

top 3 goals (%)

# of times ranked in

top 5 goals (%)

1. Prevent worsening of future physical appearance

7.65 (2.30) 0 – 10 12 (24%) 12 (24%) 31 (61%) 42 (82%)

2. Prevent future lung/heart problems

6.55 (3.71) 0 – 10 12 (24%) 13 (25%) 30 (59%) 35 (67%)

3. Improve current physical appearance

6.37 (3.14) 0 – 10 9 (18%) 5 (10%) 25 (25%) 35 (67%)

4. Prevent future back pain 5.76 (3.30)

0 – 10 7 (14%) 7 (14%) 16 (31%) 32 (63%) 5. Prevent future general

health problems 5.20 (3.66)

0 – 10 5 (10%) 7 (14%) 21 (41%) 28 (55%)

6. Prevent early mortality 3.02 (4.16)

0 – 10 9 (18%) 1 (2%) 13 (25%) 15 (29%) 7. Prevent future restriction

of physical activities 2.98 (2.65)

0 – 8 0 0 3 (6%) 11 (22%)

8. Decrease current back pain 2.80 (3.55)

0 – 10 3 (6%) 1 (2%) 9 (18%) 13 (25%) 9. Prevent problems with

future emotional well-being 2.45 (2.50)

0 – 8 0 0 1 (2%) 8 (16%) 10. Improve current self-

esteem 2.06 (2.95)

0 – 8 0 0 3 (6%) 11 (22%) 11. Prevent loss of future self-

esteem 1.90 (2.15)

0 – 8 0 0 1 (2%) 3 (6%) 12. Prevent problems with

pregnancy or childbirth 1.75 (2.51)

0 – 7 0 0 0 5 (10%) 13. To improve current emotional

well-being 1.59 (2.33)

0 – 7 0 0 0 7 (14%) 14. To eliminate need to wear a

brace 1.37 (2.46)

0 – 9 0 2 (4%) 2 (4%) 5 (10%) 15. Prevent future restriction of

participation in sport/recreation

1.04 (1.74) 0 – 8 0 0 1 (2%) 1 (2%)

16. Prevent problems with future relationships/marriage

0.86 (1.71) 0 – 7 0 0 0 2 (4%)

17. Improve current physical activities

0.55 (1.57) 0 – 8 0 0 1 (2%) 2 (4%)

18. Improve employment and career prospects

0.37 (1.23) 0 – 7 0 0 0 1 (2%)

19. Improve current friendships/relationships

0.35 (1.13) 0 – 6 0 0 0 1 (2%)

20. Prevent problems with sexual function

0.25 (0.98) 0 – 5 0 0 0 0

21. Improve current participation in sport/recreation

0.22 (0.83) 0 – 4 0 0 0 0

* Goal ranked # 1 scored 10 points; # 2 scored 9 points, ……….. # 10 scored 1 point; goals ranked below # 10 were scored 0. Top 10 reasons are highlighted in bold print.

114

7.3 Parents’ Perception of their Children’s Desires of Surgery for Scoliosis

Parents believe that their children express a wide range (0 – 5) in the strength of their

desires for each of the goals of surgery. Based on parents’ perceptions of their

children’s strength of desires for each goal (means; std. dev.), “prevent worsening of

future physical appearance” (4.6; 0.82), “improve current physical appearance” (4.37;

1.01), “prevent future back pain” (4.02; 1.42), “prevent future general health problems”

(3.63; 1.73), and “prevent future restriction of physical activities” (3.60; 1.33) were the

five strongest rated desires of surgery in aggregate. (See Table 7.5)

Based on ranking of the most important reasons (goals) for surgery, the top five reasons

that parents believe that their children would have picked were “prevent worsening of

future physical appearance”, which was ranked as the most important reason that their

children would report for undergoing surgery, with 42 of 49 parents (86%) reporting this

goal among their children’s top 5 reasons. This was followed by “improve current

physical appearance” ranked by 37 of 49 parents (76%), “prevent future back pain”

ranked by 22 of 49 parents (45%), “prevent future general health problems” and “prevent

future lung/heart problems” both ranked by 19 of 49 parents (39%) among their

children’s top five reasons. Like patients, the single largest number of parents reported

that the goal of “improve current physical appearance” would be their children’s most

important reason for surgery (18 of 49; 37%), followed by 10 parents (20%) who felt that

“prevent worsening of future physical appearance” would be their children’s number one

reason for surgery. (See Table 7.6)

115

Table 7.5 Parents’ perceptions of their Children’s Desires of Surgery (ranked in descending order)

GOALS OF SURGERY

MEAN (SD) Range

# of Ratings of “4” or “5”* (%)

1. Prevent worsening of future physical appearance

4.60 (0.82) 1 – 5 48 (91%)

2. Improve current physical appearance

4.37 (1.01) 1 – 5 44 (83%)

3. Prevent future back pain 4.02 (1.42)

0 – 5 39 (74%) 4. Prevent future general health

problems 3.63 (1.73)

0 – 5 36 (68%) 5. Prevent future restriction of

physical activities 3.60 (1.33)

0 – 5 29 (55%) 6. Prevent future restriction of

participation in sport/recreation 3.58 (1.38)

0 – 5 28 (53%) 7. Prevent future lung/heart

problems 3.37 (1.86)

0 – 5 31 (58%) 8. To eliminate need to wear a

brace 3.12 (2.25)

0 – 5 33 (62%)

9. Improve current self-esteem 3.06 (1.92)

0 – 5 28 (53%)

10. Decrease current back pain 3.02 (2.06)

0 – 5 27 (51%) 11. Prevent loss of future self-

esteem 2.96 (1.91)

0 – 5 25 (47%) 12. Prevent problems with future

emotional well-being 2.71 (1.96)

0 – 5 22 (42%) 13. To improve current emotional

well-being 2.69 (1.90)

0 – 5 22 (42%)

14. Prevent early mortality 2.67 (2.15)

0 – 5 24 (45%) 15. Improve current physical

activities 2.62 (1.68)

0 – 5 16 (30%) 16. Improve current participation in

sport/recreation 2.62 (1.75)

0 – 5 18 (34%) 17. Prevent problems with

pregnancy or childbirth 2.29 (1.99)

0 – 5 16 (30%) 18. Improve employment and

career prospects 2.25 (2.08)

0 – 5 16 (30%) 19. Prevent problems with future

relationships/marriage 2.02 (1.86)

0 – 5 13 (25%) 20. Prevent problems with sexual

function 1.96 (2.02)

0 – 5 15 (28%) 21. Improve current

friendships/relationships 1.67 (1.64)

0 - 5 10 (19%) * Number of parents (%) who believed their children “strongly desired” or “very strongly desired” this goal of surgery. Parents’ perception of their children’s five strongest desires of surgery are in bold print.

116

Table 7.6 Parents’ Perception of their Children’s Reasons for Surgery Ranked in Descending Order of Importance

REASONS FOR SURGERY

Mean* (SD)

Range*

# of times ranked 1

(10 points)(%)

# of times ranked 2 (9 points)

(%)

# of times ranked in

top 3 goals (%)

# of times ranked in

top 5 goals (%)

1. Prevent worsening of future physical appearance

7.76 (2.44) 0 - 10 10 (20%) 15 (31%) 34 (69%) 42 (86%)

2. Improve current physical appearance

7.59 (3.03) 0 – 10 18 (37%) 9 (18%) 34 (69%) 37 (76%)

3. Prevent future back pain 4.47 (3.40)

0 – 10 2 (4%) 5 (10%) 12 (24%) 22 (45%) 4. Prevent future general

health problems 4.00 (3.56)

0 – 10 4 (8%) 2 (4%) 11 (22%) 19 (39%) 5. Prevent future lung/heart

problems 3.84 (3.64)

0 – 10 3 (6%) 4 (8%) 10 (20%) 19 (39%)

6. Decrease current back pain 3.47 (3.83)

0 – 10 3 (6%) 3 (6%) 12 (24%) 19 (39%) 7. To eliminate need to wear a

brace 3.12 (3.75)

0 – 10 5 (10%) 2 (4%) 9 (18%) 14 (29%) 8. Prevent future restriction

of physical activities 3.02 (2.52)

0 – 9 0 1 (2%) 2 (4%) 11 (22%) 9. Improve current self-

esteem 2.14 (2.70)

0 – 8 0 0 2 (4%) 8 (16%)

10. Prevent early mortality 2.14 (3.63)

0 – 10 4 (8%) 2 (4%) 9 (18%) 10 (20%) 11. Prevent future restriction of

participation in sport/recreation

1.71 (2.59) 0 – 8 0 0 3 (6%) 7 (14%)

12. Prevent loss of future self-esteem

1.67 (2.05) 0 – 7 0 0 0 3 (6%)

13. Improve current physical activities

1.63 (2.63) 0 – 9 0 1 (2%) 2 (4%) 6 (12%)

14. Prevent problems with future relationships/marriage

1.61 (2.56) 0 – 10 1 (2%) 0 1 (2%) 6 (12%)

15. To improve current emotional well-being

1.47 (2.34) 0 – 7 0 0 0 5 (10%)

16. Prevent problems with future emotional well-being

1.31 (2.00) 0 – 8 0 0 1 (2%) 2 (4%)

17. Prevent problems with pregnancy or childbirth

1.29 (2.28) 0 – 7 0 0 0 5 (10%)

18. Improve employment and career prospects

1.06 (2.50) 0 – 10 2 (4%) 0 2 (4%) 4 (8%)

19. Improve current participation in sport/recreation

0.78 (1.97) 0 – 10 1 (2%) 0 1 (2%) 2 (4%)

20. Improve current friendships/relationships

0.73 (1.99) 0 – 9 0 1 (2%) 2 (4%) 3 (6%)

21. Prevent problems with sexual function

0.33 (1.16) 0 – 6 0 0 0 1 (2%)

* Goal ranked # 1 scored 10 points; # 2 scored 9 points, ……….. # 10 scored 1 point; goals ranked below # 10 were scored 0. Top 10 reasons are highlighted in bold print.

117

7.4 Comparison of Patients’ and Parents’ Desires of Surgery for Scoliosis

Repeated measures ANOVA and paired T-tests were used to make the respective

comparisons.

Table 7.7 Patients’ & Parents’ Desires of Surgery: means (std. dev) & ranges

Patients’

Desires

Parents’

Desires

Parents’ perception of

their Children’s Desires

Index of All Desires

(goals) of Surgery

46.72 (18.97)

2.86 – 94.29

64.91 (17.02)

28.57 - 97.14

59.78 (20.94)

11.43 - 99.05

Index of Immediate Desires (goals) of Surgery

43.36 (19.39)

0 – 90.00

57.64 (20.77)

15.00 – 95

57.88 (22.74)

5 – 97.5

Index of Future Desires

(goals) of Surgery

48.78 (20.85)

4.62 – 96.92

69.38 (18.43)

26.15 – 100

60.95 (23.05)

10.77 – 100

Appearance

Desires (goals)

80.73 (22.01)

0 - 100

88.30 (12.82)

40.00 - 100

89.62 (17.49)

20 - 100

Pain (relief)

Desires (goals)

56.12 (24.43)

0 - 100

67.67 (26.19)

0 - 100

67.69 (28.05)

0 – 100

Physical Functional

Desires (goals)

45.45 (25.70)

0 – 100

58.11 (21.92)

0 - 100

58.62 (23.52)

8 – 100

Psychosocial

Desires (goals)

32.83 (26.85)

0 - 100

57.63 (25.13)

0 – 100

48.68 (31.43)

0 – 100

Health

Desires (goals)

48.55(28.59)

0 - 100

72.36 (21.96)

10 - 100

59.81 (31.06)

0 – 95.00

118

Hypothesis 6: Patients’ (pre-treatment) desires are different from their Parents’ (pre-

treatment) desires of surgery for scoliosis. (See Table 7.7 & Figure 7.3)

Strength of Desires for Goals of Surgery Patients' vs Parents' Desires

0.00

10.0020.00

30.0040.00

50.00

60.0070.00

80.0090.00

100.00

All

Goa

ls

Pres

ent

Goa

ls

Futu

re G

oals

App

eara

nce

Goa

ls

Pain

Goa

ls

Func

tiona

lG

oals

Psyc

hoso

cial

Goa

ls

Hea

lth G

oals

Mea

n In

dex

PatientsParents

Patient

Vs Parent

- 17.30

p=0.000

- 13.49

p=0.000

-19.65

p=0.000

- 7.55

p=0.02

- 9.81

p=0.02

- 12.23

p=0.01

- 24.26

p=0.000

- 21.98

p=0.000

Mean Diff. Sig. (2-tailed)

Figure 7.3 The mean index of the strength of desires with 95% confidence intervals, overall and for each of the domains are depicted for patients and their parents. The mean differences for the paired comparisons are provided along with the 2-tailed significance level.

Parents expressed similar sets of desires or wishes as their children, with the five most

important reasons picked by parents being the same as the top five most important

reasons for surgery reported by patients. However, the strength of parents’ desires for

these goals was significantly greater than the strength of their children’s across all goal

domains. This was in keeping with the finding of parents’ greater concerns about

scoliosis than their children.

119

Hypothesis 7: Patients’ (pre-treatment) desires are different from their Parents’ perception of

their child’s (pre-treatment) desires of surgery for scoliosis. (See Table 7.7 & Figure 7.4)

Strength of Desires for Goals of Surgery Patients' vs Parents' Perception of Children's Desires

0.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

All G

oals

Pre

sent

Goa

ls

Futu

re G

oals

App

eara

nce

Goa

ls

Pain

Goa

ls

Func

tiona

lG

oals

Psy

chos

ocia

lG

oals

Heal

th G

oals

Mea

n In

dex

PatientsParent-Child

Patients’

vs Parents’

perception of child

-1.08

0.75

-3.63

0.325

0.49

0.89

-5.66

0.155

3.52

0.363

-0.15

0.966

-4.2

0.321

2.075

0.620

Mean Diff.

Sig (2-tailed)

Figure 7.4 The mean index of the strength of desires with 95% confidence intervals, overall and for each of the domains are depicted for Patients’ and Parent’s perception of their children’s desires. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.

Parents’ perception of their children’s desires was similar to the desires of surgery reported by

their children. Parents recognized what domains their children would report as well as the

strength of these desires. The mean differences between the strength of the parents’

perception of their children’s desires of surgery and actual strength of desires of surgery

reported by their children were all clinically and statistically insignificant.

120

7.5 Surgeons’ Goals of Surgery for Scoliosis

Surgeons’ goals of treatment were measured in two ways. First, surgeons were asked

to report how often each item was a reason for recommending surgery for their typical

patients with adolescent idiopathic scoliosis who met the surgeon’s indications for

surgery on a 7-point ordinal rating scale (0 - “never”; 1 - “very rarely”; 2 - “rarely”; 3 -

“sometimes”; 4 - “often; 5 - “very often”; and 6 - “always”). This provided an estimate of

the frequency of each individual item as an explicit goal of surgery from each surgeon’s

perspective. Second, surgeons were asked to rank these goals in order of descending

importance (“most to least important reason”).

The most frequently cited goals of surgery are in the physical appearance domain with a

mean frequency index (out of a maximum 100) of 69.05; std. dev. 14.23. Surgeons at

the Hospital for Sick Children were not significantly different from all other Canadian

surgeons. (See Figure 7.5)

Surgeons' Goals of Surgery

0

10

20

30

40

50

60

70

80

90

100

All

Goa

ls

Pre

sent

Goa

ls

Futu

re G

oals

App

eara

nce

Goa

ls

Pai

n G

oals

Func

tiona

lG

oals

Psy

chos

ocia

lG

oals

Hea

lth G

oals

Mea

n In

dex

of F

requ

ency

All SurgeonsHSC Surgeons

Figure 7.5 Surgeons’ mean frequency of goals overall and by domain, with 95% confidence intervals.

121

Based on the frequency of recommendation for specific goals/items, the five most

frequently cited goals (means; std. dev.) of surgery were “prevent worsening of future

physical appearance” (5.0; 1.06), “improve current physical appearance” (4.67; 1.05),

“improve current self-esteem” (3.25; 1.19), “improve current emotional well-being” (3.0;

1.35), and “prevent loss of future self-esteem” (2.96; 1.3). Surgeons, however, do have

a wide range in the frequency with which they cite specific goals as indications for

surgery in their patients. With the exception of the two items pertaining to physical

appearance, the range in the frequency with which these goals were reported by

surgeons was from 0 to 5. In aggregate, all other items were reported “rarely” to “never”

as goals of surgery. Nonetheless, between 20% and 30% of all surgeons surveyed

reported “prevent future lung/heart problems”, “prevent problems with future emotional

well-being”, “prevent future general health problems”, “prevent future back pain”, and “to

eliminate need to wear a brace” as goals at least “often” for their patients. (See Table

7.8)

Based on their ranking of the most important goals for surgery, the top four goals picked

by all surgeons surveyed were among the top five most important desires of surgery

reported by patients and parents. Overall, “prevent worsening of future physical

appearance” was ranked by surgeons as the most important reason for undergoing

surgery, followed by “improve current physical appearance”, with 22 of 24 surgeons

(92%) and 20/24 surgeons (83%) respectively reporting these two items among their top

5 most important goals. This was followed by “prevent future lung and heart problems”

ranked by 11/24 surgeons (46%), “prevent future back pain” ranked by 9/24 surgeons

(38%) and “to improve current emotional well-being ranked by 7/24 surgeons (29%) as

one of their top five reasons for surgery. Between 25% and 33% of surgeons also

reported “prevent future general health problems”, “prevent problems with future

122

emotional well-being”, “improve current self-esteem” among their top five most important

goals of surgery. (See Table 7.9)

Surgeons from the Hospital for Sick Children reported similar importance rankings as

other Canadian surgeons, but unlike their counterparts, did not rank “prevent future back

pain” as an important goal for surgery. Instead they prioritized “prevent future emotional

problems” along with “improve current emotional well-being” among their top five most

important goals for surgery.

123

Table 7.8 Surgeons’ Goals of Surgery in Descending Order of Frequency

* Number of surgeons (%) who reported that this item was “often”, “very often” or “always” a goal of surgery. Surgeons’ five most frequently reported goals of surgery are in bold print.

GOALS OF SURGERY

MEAN (SD)Range

# of Ratings of 4, 5, 6 (%)

# of Ratings of 5, 6 (%)

1. Prevent worsening of future physical appearance

5.00 (1.06) 2 – 6 22 (92%) 18 (75%)

2. Improve current physical appearance

4.67 (1.05) 2 – 6 22 (92%) 13 (54%)

3. Improve current self-esteem 3.25 (1.19)

0 – 5 11 (46%) 3 (13%) 4. To improve current emotional well-

being 3.00 (1.35)

0 – 5 11 (46%) 2 (8%)

5. Prevent loss of future self-esteem 2.96 (1.30)

0 – 5 9 (38%) 2 (8%)

6. Prevent future lung/heart problems 2.63 (1.50)

0 – 5 6 (25%) 3 (13%) 7. Prevent problems with future emotional

well-being 2.58 (1.50)

0 – 5 7 (29%) 2 (8%)

8. Prevent future general health problems 2.58 (1.50)

0 – 5 7 (29%) 2 (8%)

9. Prevent future back pain 2.33 (1.17)

0 – 4 4 (17%) 0 10. Prevent future restriction of physical

activities 2.13 (1.12)

0 – 4 1 (4%) 0

11. To eliminate need to wear a brace 2.00 (1.72)

0 – 5 5 (21%) 2 (8%)

12. Decrease current back pain 1.96 (1.08)

0 – 4 1 (4%) 0 13. Prevent future restriction of participation

in sport/recreation 1.67 (1.17)

0 – 4 2 (8%) 0 14. Improve employment and career

prospects 1.67 (1.09)

0 – 3 0 0

15. Prevent early mortality 1.61 (1.50)

0 – 5 2 (8%) 1 (4%) 16. Prevent problems with future

relationships/marriage 1.54 (1.32)

0 – 5 1 (4%) 1 (4%) 17. Improve current

friendships/relationships 1.50 (1.32)

0 – 4 1 (4%) 0

18. Improve current physical activities 1.38 (1.01)

0 – 3 0 0 19. Improve current participation in

sport/recreation 1.13 (0.99)

0 – 3 0 0 20. Prevent problems with pregnancy or

childbirth 0.88 (0.85)

0 – 2 0 0

21. Prevent problems with sexual function 0.63 (0.82)

0 – 2 0 0

124

Table 7.9 Surgeons’ Goals of Surgery Ranked in Descending Order of Importance

GOALS OF SURGERY

Mean* (SD)

Range*

# of times ranked 1

(10 points)(%)

# of times ranked 2 (9 points)

(%)

# of times ranked in

top 3 goals (%)

# of times ranked in

top 5 goals (%)

1. Prevent worsening of future physical appearance

8.46 (2.75) 0 – 10 9 (38%) 11(46%) 21 (88%) 22 (92%)

2. Improve current physical appearance

7.96 (3.44) 0 – 10 12 (50%) 6 (25%) 18 (75%) 20 (83%)

3. Prevent future lung/heart problems

4.04 (3.87) 0 – 10 3 (13%) 1 (4%) 6 (25%) 11 (46%)

4. Prevent future back pain 3.58 (3.37)

0 – 9 0 2 (8%) 4 (17%) 9 (38%) 5. To improve current

emotional well-being 3.13 (3.59)

0 – 9 0 2 (8%) 6 (25%) 7 (29%) 6. Prevent future general

health problems 2.96 (3.44)

0 – 9 0 2 (8%) 3 (13%) 6 (25%) 7. Prevent problems with future

emotional well-being 2.92 (2.89)

0 – 8 0 0 1 (4%) 6 (25%)

8. Improve current self-esteem 2.75 (3.33)

0 – 8 0 0 3 (13%) 8 (33%) 9. Prevent loss of future self-

esteem 2.71 (3.13)

0 – 8 0 0 1 (4%) 6 (25%) 10. Prevent future restriction of

physical activities 2.17 (2.68)

0 – 8 0 0 1 (4%) 4 (17%) 11. To eliminate need to wear a

brace 1.83 (2.93)

0 – 8 0 0 2 (8%) 4 (17%)

12. Decrease current back pain 1.75 (2.79)

0 – 8 0 0 1 (4%) 4 (17%) 13. Prevent future restriction of

participation in sport/recreation

1.38 (2.58) 0 – 8 0 0 1 (4%) 4 (17%)

14. Prevent early mortality 0.75 (1.78)

0 – 8 0 0 1 (4%) 1 (4%) 15. Improve current physical

activities 0.63 (1.58)

0 – 5 0 0 0 0 16. Improve current participation

in sport/recreation 0.46 (1.53)

0 – 7 0 0 0 1 (4%) 17. Prevent problems with future

relationships/marriage 0.46 (1.28)

0 – 5 0 0 0 0 18. Improve employment and

career prospects 0.46 (1.47)

0 – 7 0 0 0 1 (4%) 19. Improve current

friendships/relationships 0.04 (0.20)

0 – 1 0 0 0 0 20. Prevent problems with

pregnancy or childbirth 0.04 (0.20)

0 – 1 0 0 0 0 21. Prevent problems with

sexual function 0.04 (0.20)

0 - 1 0 0 0 0 * Goal ranked # 1 scored 10 points; # 2 scored 9 points, ……….. # 10 scored 1 point; goals ranked below # 10 were scored 0. Top 5 goals are highlighted in bold print.

125

7.6 Comparison of Patients’ and Parents’ Desires (wishes) with Surgeons’

Goals of Surgery for Scoliosis

The overall rankings from most to least desired priorities were determined for patients

and parents respectively. (See Table 7.2 & 7.4) Similarly, the overall rankings of

surgeon goals were determined from Section III of the Surgeon Questionnaire. (See

Table 7.9)

Hypothesis 8: Patients’ and Parents’ ranking of importance of (pre-treatment) desires

of surgery are different from Surgeons’ ranking of importance of goals of surgery.

Table 7.10 Top 5 ranked reasons for/goals of surgery for patients, parents & surgeons.

RANK ORDER OF

IMPORTANCE

CHILDREN’S DESIRES OF

SURGERY

PARENTS’

DESIRES OF SURGERY

SURGEONS’ GOALS OF SURGERY

1

Prevent worsening of physical appearance in the future

2

Improve present

physical appearance

Prevent future lung and heart

problems

Improve present emotional well-

being

3

Prevent

future pain

Improve present

physical appearance

Prevent future

emotional problems

4

Prevent future lung and heart

problems

Prevent

future pain

Improve present

physical appearance

5

Prevent general health problems in the

future

Prevent future lung and heart

problems

126

Prevention of future deterioration of physical appearance (deformity) was the highest

ranked reason for undergoing surgery by patients and their parents, and was also the

most surgeons’ most important goal of surgery for idiopathic scoliosis. Improvement of

current physical appearance and prevention of future lung and heart problems were also

among the top five reasons/goals for surgery for, patients, their parents and surgeons.

Patients and parents ranked prevention of future back pain and prevention of future

health problems as one of their top five reasons for surgery but these were not important

goals for surgeons (p<0.0005). Surgeons ranked improvement of current emotional

well-being and prevention of future emotional problems among the highest ranked goals

of surgery (p<0.0005).

127

Table 7.11 Patients, Parents, Parents’ perception of their child’s desires, All Canadian Surgeons’ goals, & HSC Surgeons’ goals (Top 5 desires/goals are colour coded)

Patients’ Desires

Parents’ Desires

Parents’ Perception of

Child’s Desires

All Surgeons’

Goal

HSC Surgeons’

Goals Prevent worsening of physical appearance

7.11 (2.57) 1

7.65 (2.30) 1

7.76 (2.44) 1

8.46 (2.75) 1

7.00 (4.69) 1

Improve current physical appearance

6.69 (3.46) 2

6.37 (3.14) 3

7.59 (3.03) 2

7.96 (3.44) 2

5.00 (5.77) 4

Prevent future back pain 6.17 (2.93)

3 5.76 (3.30)

4 4.47 (3.40)

3 3.58 (3.37)

4 0.50 (1.0)

11 Prevent future lung/heart

problems 4.65 (3.93)

4 6.55 (3.71)

2 3.84 (3.64)

5 4.04 (3.87)

3 4.25 (5.06)

5 Prevent future general

health problems 4.31 (3.44)

5 5.20 (3.66)

5 4.00 (3.56)

4 2.96 (3.44)

6 0.00

Decrease current back pain

4.19 (3.98) 6

2.80 (3.55) 8

3.47 (3.83) 6

1.75 (2.79) 12

0.00

Prevent restriction of future physical activity

3.31 (2.88) 7

2.98 (2.65) 7

3.02 (2.52) 8

2.17 (2.68) 10

1.50 (3.0) 8

Prevent restriction in future participation of sport/recreation

2.57 (3.01) 8

1.04 (1.74)

15

1.71 (2.59)

11 1.38 (2.58)

13

0.75 (1.50)

10 Improve current self-

esteem 2.52 (3.08)

9 2.06 (2.95)

10 2.14 (2.70)

9 2.75 (3.33)

8 4.00 (2.83)

6 Eliminate need to wear a

brace 2.46 (3.87)

10 1.37 (2.46)

14 3.12 (3.75)

7 1.83 (2.93)

11 1.00 (2.0)

9

Prevent early mortality 1.5 (2.6)

11 3.02 (4.16)

6 2.14 (3.63)

10 0.75 (1.78)

14 0.00

Prevent loss of self-esteem in the future

1.28 (2.33) 12

1.90 (2.15) 11

1.67 (2.05) 12

2.71 (3.13) 9

3.75 (2.50) 7

Prevent problems with pregnancy/childbirth

1.2 (2.12) 13

1.75 (2.51) 12

1.29 (2.28) 17

0.04 (0.20) 20

0.00

Improve current emotional well-being

1.13 (2.27) 14

1.59 (2.33)

13

1.47 (2.34)

15 3.13 (3.59)

5

6.25 (4.19)

2

Prevent future emotional or psychological problems

1.07 (1.99) 15

2.45 (2.50)

9

1.31 (2.00)

16 2.92 (2.89)

7

5.50 (3.70)

3 Improve current physical

activities 0.85 (1.76)

16 0.55 (1.57)

17 1.63 (2.63)

13 0.63 (1.58)

15

0.00

Improve participation in sport/recreation

0.85 (2.08) 17

0.22 (0.83)

21

0.78 (1.97)

19 0.46 (1.28)

17

0.00

Prevent problems with future

relationships/marriage 0.52 (1.49)

18

0.86 (1.71)

16

1.61 (2.56)

14 0.46 (1.47)

18

0.00

Improve employment/career

opportunities 0.43 (1.02)

19

0.37 (1.23)

18

1.06 (2.50)

18 0.04 (0.20)

19

0.00

Improve current friendships/relationships

0.35 (1.08) 20

0.35 (1.13)

19

0.73 (1.99)

20 0.46 (1.53)

16

0.00

Prevent problems with sexual function

0.35 (1.36) 21

0.25 (0.98)

20

0.33 (1.16)

21 0.04 (0.20)

21

0.00

128

7.7 Summary

In this chapter, we explored what patients and parents want from the surgery for

scoliosis and how they ranked these desires or wishes in the order of importance.

Correspondingly, surgeons provided their goals or reasons for scoliosis surgery and

ranked these goals in their order or importance. We compared patients’ desires with

those of their parents. We were also interested in determining whether parents were

aware of their child’s desires. Finally we compared the desires of patients and their

parents with the goals of surgery reported by surgeons who treat scoliosis.

Although patients report a wide range in the strength desires for each of the goals of

surgery, their strongest desire of surgery and consistently the most important reason for

undergoing surgery was related to preventing deterioration of, or improving, physical

appearance. Their parents were identical in this regard. The five most important

reasons for surgery reported by parents were the same as the top five most important

reasons for surgery reported by patients. Although, parents had very similar desires or

wishes as their children, the strength of their desires was consistently greater than their

children across all domains and items/goals. However, parents seemed to recognize

this difference and were able to predict their children’s most important desires as well as

the strength of these desires. This was consistent with the finding of parents’ greater

concerns about scoliosis than their children and their knowledge of this difference.

Like patients and parents, Canadian scoliosis surgeons also identified physical

appearance as the most frequent and most important reason for recommending surgery

for scoliosis. Surgeons, particularly those from the Hospital for Sick Children, identified

goals pertaining to emotions among the top five goals but these were not rated as

129

important reasons by their patients or their parents. Prevention of future back pain was

one of the top five reasons for surgery for patients, parents and Canadian scoliosis

surgeons but not at all for surgeons from the Hospital for Sick Children. Surgeons from

the Hospital for Sick Children reported similar importance rankings as other Canadian

surgeons, but unlike their counterparts, did not rank “prevent future back pain” as an

important goal for surgery. Instead they prioritized “prevent future emotional problems”

along with “improve current emotional well-being” among their top five most important

goals for surgery.

130

Chapter 8 Expectations of the Natural History & Surgical Outcomes for Scoliosis

This chapter deals with expectations pertaining to the natural history and surgical

treatment of scoliosis, respectively. Expectations are defined as the estimation of the

likelihood (probability) that a given event or outcome might occur. Respondents were

asked to report their expectations regarding scoliosis (their perception of the prognosis

or natural history of the untreated condition), as well as expectations about treatment

(surgery) of scoliosis.

8.1 Prior Expectations of Scoliosis: Perception of Natural History

Aim 4 of the thesis was to describe and compare patients’, parents’ and surgeons’

expectations of the natural history of scoliosis. Patients and parents were asked to

report their perception of the likelihood that a given event might occur in the future

because of the scoliosis. This likelihood was rated on an eight point ordinal scale of

probabilities ranging from “Not a problem: 0%” (0) to “Extremely likely: > 95%” (7). The

surgeon’s perspective on the natural history of untreated idiopathic scoliosis was

measured by asking each surgeon to consider a typical patient with adolescent

idiopathic scoliosis who met that surgeon’s criteria for recommending surgery, and to

report the likelihood that each of the listed events might occur, using the same range of

probabilities. Means and standard deviations were determined for the perceived

likelihood that a given event (13 items) might occur in the future because of untreated

scoliosis, from the perspective of (i) Patients, (ii) Parents, (iii) Parents’ perception of their

Child’s expectations, and (iv) Surgeons, respectively. The perceived likelihood of future

problems was also calculated for each of the 5 domains: (i) physical appearance, (ii)

pain, (iii) physical function, (iv) psychosocial: social function, emotion/self esteem, and

(v) health.

131

8.1.1 Patients’ Prior Expectations of Scoliosis: Perception of Natural History

Patients reported a wide range of beliefs (0 – 7) about the likelihood of various problems

if their scoliosis was left untreated.

Table 8.1 Patients’ Expectations Regarding Scoliosis Means (std. dev); Ranges All Patients

n = 55 Girls

n = 48 Boys n = 7

Worsening Physical Appearance 6.02 (1.33)

0 – 7 5.96 (1.35)

0 – 7 6.43 (1.13)

4 – 7 Develop

Back Pain 5.82 (1.50) 0 – 7

5.75 (1.54) 0 – 7

6.29 (1.25) 4 – 7

Restricted Physical Activities 5.42 (1.37)

0 – 7 5.35 (1.39)

0 – 7 5.86 (1.21)

4 – 7 Restricted

Sports/Recreation 5.47 (1.37) 0 – 7

5.44 (1.38) 0 – 7

5.71 (1.38) 4 – 7

Emotional Problems 4.11 (1.86)

0 – 7 4.02 (1.80)

0 – 7 4.71 (2.29)

0 – 7 Poorer

Self-Esteem 4.93 (1.78) 0 – 7

4.92 (1.70) 0 – 7

5.00 (2.45) 0 – 7

Problems Relationship/marriage 3.75 (1.84)

0 – 7 3.60 (1.87)

0 – 7 4.71 (1.38)

3 – 7 Problems with

Pregnancy/Childbirth 3.75 (2.35) 0 – 7

4.17 (2.15) 0 – 7

N/A

Problem with Sexual Function 2.67 (2.22)

0 – 7 2.69 (2.31)

0 – 7 2.57 (1.62)

0 – 4 Employment/Career

problems 3.53 (2.11) 0 – 7

3.46 (2.09) 0 – 7

4.00 (2.31) 1 – 7

Lung & Heart Problems 4.58 (2.31)

0 – 7 4.50 (2.39)

0 – 7 5.14 (1.68)

2 – 7 General Health

Problems 4.96 (1.86) 0 – 7

4.90 (1.88) 0 – 7

5.43 (1.72) 2 – 7

Shorter Life 3.49 (2.07)

0 – 7 3.48 (2.05)

0 – 7 3.57 (2.37)

0 – 7

Overall they believed the following items as the top most likely consequences of their

scoliosis (mean score out of 7; standard deviation). (See Table 8.1 & Figure 8.1)

132

i. Worsening of physical appearance in the future (6.02, 1.33): 73% (40/55) of

patients believed that deterioration of physical appearance in the future was either

very or extremely likely;

ii. Back pain in the future (5.82; 1.5): 65% (36/55) of patients believed that future

back pain was either very or extremely likely;

iii. Restriction of future sports and recreational activities (5.47; 1.37) & Restriction of

future physical activities (5.42; 1.37): 49% (27/55) & 45% (25/55) of patients

respectively believed that it was very or extremely likely that future recreational and

physical functional activities would be restricted due to their scoliosis;

iv. Health Problems (4.96; 1.86): 45% (25/55) of patients believed that they were very

or extremely likely to develop future general health problems if their scoliosis was

not treated;

v. Effect on Self esteem (4.93; 1.78): 44% (24/55) of patients believed that if their

scoliosis was not treated it was very or extremely likely to affect their self esteem;

vi. Lung and Heart Problems (4.58; 2.31): 44% (24/55) of the patients believed that

they would be very or extremely likely to develop lung and heart problems in the

future if their scoliosis was left untreated.

A significant proportion of patients also believed that they were at least likely (>50%

probability) to experience future problems with pregnancy & childbirth (20/48: 42%);

emotional problems (22/55: 40%); shorter life span (21/55: 38%); problems with

employment (19/55: 35%); and relationship & marital problems (16/55: 29%), if their

scoliosis was not treated. Although 25% (14/55) believed that future difficulties with

sexual function was likely, the majority (32/55: 58%) believed that this was unlikely to

extremely unlikely.

133

Boys in this cohort had similar beliefs about the consequences of untreated scoliosis as

the girls. However, they tended to believe that these consequences were slightly more

likely than the girls did for all issues except future sexual problems. None of these

differences reached statistical significance. (See Table 8.1 & Figure 8.1)

Patients' Expectations Regarding Scoliosis (Natural History)

0

1

2

3

4

5

6

7

Wor

se A

ppea

ranc

e

Back

Pai

n

Res

trict

ed S

ports

Dec

linin

g P

hysi

cal

Act

iviti

es

Hea

lth P

robl

ems

Poo

rer S

elf-E

stee

m

Lung

/Hea

rt Pr

oble

ms

Em

otio

nal P

robl

ems

Rel

atio

nshi

p Pr

oble

ms

Preg

nanc

y Pr

oble

ms

Em

ploy

men

t pro

blem

s

Sho

rter L

ife

Sex

ual P

robl

ems

Like

lihoo

d All PatientsGirlsBoys

Figure 8.1 Patients’ mean expectations (perception of likelihood) of untreated scoliosis with standard deviations, in decreasing order of perceived likelihood.

134

8.1.2 Parents’ Prior Expectations of Scoliosis: Perception of Natural History

Like their children, parents reported a wide range of beliefs (0 – 7) about the likelihood of

various problems for their child, if their child’s scoliosis was left untreated.

Table 8.2 Parents’ Expectations Regarding Scoliosis Means (std. dev); Ranges All Parents

n = 55 Parents of

Girls n = 48

Parents of Boys n = 7

Worsening Physical Appearance 6.60 (0.95)

2 – 7 6.59 (1.00)

2 – 7 6.71 (0.49)

6 – 7 Develop

Back Pain 6.13 (1.21) 2 – 7

6.15 (1.19) 2 – 7

6.00 (1.41) 4 – 7

Restricted Physical Activities 6.04 (1.39)

0 – 7 6.13 (1.11)

3 – 7 5.43 (2.64)

0 – 7 Restricted

Sports/Recreation 5.96 (1.47) 0 – 7

6.04 (1.26) 2 – 7

5.43 (2.51) 0 – 7

Emotional Problems 5.81 (1.54)

0 – 7 5.78 (1.58)

0 – 7 6.00 (1.41)

4 – 7 Poorer

Self-Esteem 5.85 (1.36) 2 – 7

5.85 (1.37) 2 – 7

5.86 (1.46) 3 – 7

Problems Relationship/marriage 4.53 (2.11)

0 – 7 4.61 (2.14)

0 – 7 4.00 (1.91)

0 – 6 Problems with

Pregnancy/Childbirth 5.28 (1.66) 0 – 7

5.28 (1.66) 0 – 7

N/A

Problem with Sexual Function 3.38 (2.29)

0 – 7 3.46 (2.31)

0 – 7 2.86 (2.27)

0 – 6 Employment/Career

problems 4.49 (1.75) 0 – 7

4.57 (1.61) 0 – 7

4.00 (2.58) 0 – 7

Lung & Heart Problems 5.60 (1.46)

2 – 7 5.61 (1.48)

2 – 7 5.57 (1.40)

3 – 7 General Health

Problems 5.74 (1.42) 2 – 7

5.74 (1.47) 2 – 7

5.71 (1.11) 4 – 7

Shorter Life 3.94 (2.32)

0 – 7 3.89 (2.35)

0 – 7 4.29 (2.21)

0 – 7

135

Overall they believed the following items as the top most likely consequences of their

child’s scoliosis (mean score out of 7; standard deviation). (See Table 8.2 & Figure 8.2)

i. Worsening of physical appearance in the future (6.60; 0.95): 92% (49/53) of

parents believed that future deterioration in their child’s physical appearance was

either very or extremely likely;

ii. Back pain in the future (6.13; 1.21): 77% (41/53) believed that their child was either

very or extremely likely to experience future back pain;

iii. Restriction of future physical activities (6.04; 1.39) & Restriction of future sports

and recreational activities (5.96; 1.47): 77% (41/55) & 72% (38/53) respectively

believed that it was very or extremely likely that their child’s future recreational and

physical functional activities would be restricted;

iv. Effect on Self esteem (5.85; 1.36) & Future Emotional problems (5.81; 1.54): 68%

(36/53) of parents believed that it was very or extremely likely that if not treated

their child’s scoliosis would have an effect their self esteem and cause emotional

problems;

v. General Health Problems (5.74; 1.42) & Lung and Heart Problems (5.60; 1.46):

63% (34/53) of parents believed that their child would be very or extremely likely to

develop lung and heart problems in the future if their scoliosis was left untreated.

vi. Problems with pregnancy & childbirth (5.28; 1.66): 54% (25/46) of parents believed

that their daughters were very or extremely likely to experience problems during

pregnancy and childbirth as a consequence of their scoliosis.

A significant proportion of parents also believed that their child was at least likely (>50%

probability) to experience future problems with relationships/marriage (27/53: 51%);

have a shorter life span (22/53: 41%); and problems with employment (20/53: 38%).

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Although 30% (16/53) believed that future difficulties with sexual function was likely, a

larger number of parents (22/53: 42%) believed that this was unlikely to extremely

unlikely. Parents of girls in this cohort had similar beliefs about the consequences of

untreated scoliosis as the parents of boys. (See Table 8.2 & Figure 8.2)

Parents' Expectations Regarding Scoliosis (Natural History)

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Figure 8.2 Parents’ mean expectations (perception of likelihood) of untreated scoliosis with standard deviations, in decreasing order of perceived likelihood.

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8.1.3 Parents’ Perception of their Childs’ Prior Expectations of Scoliosis

Parents believe that their children would report a wide range of expectations (0 – 7)

about the likelihood of various problems if their scoliosis was left untreated. Parents

believed that the following items (means; std. dev.): “worsening of physical appearance”

(5.88; 1.85), “restriction of physical activities” (5.38; 1.97), “future back pain” (5.35; 2.17),

“restricted sports & recreation” (5.33; 1.96), and “poorer self esteem” (4.88; 2.18), would

have been the most likely consequences of untreated scoliosis reported by their

children. (See Table 8.3)

Table 8.3 Parents’ Perception of their Childs’ Prior Expectations of Scoliosis Parents’ Perception of their

Child’s Expectations n = 55

Worsening Physical Appearance

5.88 (1.85) 0 – 7

Develop Back Pain

5.35 (2.17) 0 – 7

Restricted Physical Activities

5.38 (1.97) 0 – 7

Restricted Sports/Recreation

5.33 (1.96) 0 – 7

Emotional Problems

4.46 (2.40) 0 – 7

Poorer Self-Esteem

4.88 (2.18) 0 – 7

Problems Relationship/marriage

3.56 (2.51) 0 – 7

Problems with Pregnancy/Childbirth

3.63 (2.54) 0 – 7

Problem with Sexual Function

2.38 (2.33) 0 – 7

Employment/Career problems

3.40 (2.23) 0 – 7

Lung & Heart Problems

4.20 (2.47) 0 – 7

General Health Problems

4.60 (2.40) 0 – 7

Shorter Life

2.48 (2.42) 0 – 7

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8.1.4 Surgeons’ Expectations of Scoliosis: Perception of Natural History

Surgeons’ perspectives about the natural history of untreated idiopathic scoliosis were

measured by asking each surgeon to consider a typical adolescent idiopathic scoliosis

who met that surgeon’s criteria for recommending surgery, and to report the likelihood

that each of the listed events might occur, rated on an eight point ordinal scale of

probabilities ranging from “Not a problem: 0%” (0) to “Extremely likely: > 95%” (7).

Overall, (All) Canadian surgeons believed the following were the top most likely

consequences of untreated scoliosis (mean score out of 7; standard deviation).

i. Worsening of physical appearance in the future (6.17; 0.87): 96% (23/24) of the

surgeons surveyed believed that future deterioration in physical appearance was

likely to extremely likely;

ii. Effect on Self esteem (5.04; 1.30): 71% (17/24) of the surgeons believed that

scoliosis would be likely to extremely likely to have an effect on their patients’ self

esteem;

iii. Future Emotional problems (5.04; 1.33): 67% (16/24) of surgeons believed that

untreated scoliosis was likely to extremely likely to be associated with future

emotional problems for their patients;

iv. Back pain in the future (4.46; 1.53): 50% (12/24) of surgeons also believed that if

left untreated their patients scoliosis was at least likely (>50% probability) to be

associated with future back pain.

A smaller but significant number of surgeons also believed that their patients were at

least likely (>50% probability) to experience future problems with “restricted physical

activities” (9/24: 38%) and “restricted sports & recreation” (9/24: 34%); and problems

with “future relationships/marriage (9/24: 38%). (See Table 8.4)

139

Table 8.4 Surgeons’ Expectations of Scoliosis: Perception of Natural History Surgeons’ (Non-HSC)

Expectations n = 20

HSC Surgeons’ Expectations

n = 4

Differences

p- value Worsening Physical

Appearance 6.25 (0.79) 4 – 7

5.75 (1.26) 4 – 7

0.303

Develop Back Pain 4.75 (1.41)

1 – 7 3.00 (1.41)

1 – 4 0.034

Restricted

Physical Activities 4.10 (1.37) 1 – 7

2.50 (1.73) 1 – 5

0.053

Restricted Sports/Recreation 4.15 (1.35)

1 – 7 2.50 (1.73)

1 – 5 0.044

Emotional Problems 5.25 (1.16)

2 – 7 4.00 (1.83)

2 – 6 0.087

Poorer

Self-Esteem 5.25 (1.12) 2 – 7

4.00 (1.83) 2 – 6

0.079

Problems Relationship/marriage 3.95 (1.64)

1 – 7 2.25 (0.96)

1 – 3 0.060

Problems with

Pregnancy/Childbirth 2.20 (1.11) 0 – 4

1.25 (1.26) 0 – 3

0.138

Problem with Sexual Function 1.80 (0.95)

0 – 3 1.25 (1.26)

0 – 3 0.326

Employment/Career

problems 3.55 (1.39) 1 – 7

1.50 (1.00) 1 – 3

0.011

Lung & Heart Problems 3.75 (1.83)

1 – 7 1.75 (1.50)

1 – 4 0.054

General Health

Problems 3.60 (1.64) 1– 7

1.75 (1.50) 1 – 4

0.049

Shorter Life 2.85 (1.76)

0 – 7 1.25 (1.26)

0 – 3 0.099

140

When compared with their counterparts in other Canadian Institutions, scoliosis

surgeons at the Hospital for Sick Children consistently reported smaller likelihood (lower

probabilities) of occurrence for all the listed items. These were only statistically and

clinically significant for “development of future back pain”, which HSC surgeons believed

was an unlikely to extremely unlikely consequence of untreated scoliosis. (See Table 8.4

& Figure 8.3)

Surgeons' Expectations of Scoliosis (Natural History)

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Figure 8.3 Surgeons’ perception of the likelihood of problems of untreated scoliosis with 95% confidence intervals. Comparison of HSC Surgeons with Other Canadian Surgeons.

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8.1.5 Comparison of Patients’, Parents’ and Surgeons’ Expectations of Scoliosis

The mean scores of (i) Patients, (ii) Parents, the (iii) Parents’ perception of their child’s

expectations, and (iv) Surgeons’ expectations of the natural history of untreated scoliosis

were compared.

Table 8.5 Comparison of Patients’, Parents’ and Surgeons’ Expectations of Scoliosis

All Patients n = 55

All Parents n = 53

Parents’ Perception of Children

All Surgeons

n = 24

HSC Surgeons

n = 4 Worsening Physical

Appearance 6.02 (1.33) 0 – 7

6.60 (0.95)2 – 7

5.88 (1.85) 0 – 7

6.17 (0.87) 4 – 7

5.75 (1.26) 4 – 7

Develop Back Pain 5.82 (1.50)

0 – 7 6.13 (1.21)

2 – 7 5.35 (2.17)

0 – 7 4.46 (1.53)

1 – 7 3.00 (1.41)

1 – 4 Restricted

Physical Activities 5.42 (1.37) 0 – 7

6.04 (1.39)0 – 7

5.38 (1.97) 0 – 7

3.83 (1.52) 1 – 7

2.50 (1.73) 1 – 5

Restricted Sports/Recreation 5.47 (1.37)

0 – 7 5.96 (1.47)

0 – 7 5.33 (1.96)

0 – 7 3.88 (1.51)

1 – 7 2.50 (1.73)

1 – 5 Emotional Problems 4.11 (1.86)

0 – 7 5.81 (1.54)

0 – 7 4.46 (2.40)

0 – 7 5.04 (1.33)

2 – 7 4.00 (1.83)

2 – 6 Poorer

Self-Esteem 4.93 (1.78) 0 – 7

5.85 (1.36)2 – 7

4.88 (2.18) 0 – 7

5.04 (1.30) 2 – 7

4.00 (1.83) 2 – 6

Problems Relationship/marriage 3.75 (1.84)

0 – 7 4.53 (2.11)

0 – 7 3.56 (2.51)

0 – 7 3.67 (1.66)

1 – 7 2.25 (0.96)

1 – 3 Problems with

Pregnancy/Childbirth 3.75 (2.35) 0 – 7

5.28 (1.66)0 – 7

3.63 (2.54) 0 – 7

2.04 (1.16) 0 – 4

1.25 (1.26) 0 – 3

Problem with Sexual Function 2.67 (2.22)

0 – 7 3.38 (2.29)

0 – 7 2.38 (2.33)

0 – 7 1.71 (1.00)

0 – 3 1.25 (1.26)

0 – 3 Employment/Career

problems 3.53 (2.11) 0 – 7

4.49 (1.75)0 – 7

3.40 (2.23) 0 – 7

3.21 (1.53) 1 – 7

1.50 (1.00) 1 – 3

Lung & Heart Problems 4.58 (2.31)

0 – 7 5.60 (1.46)

2 – 7 4.20 (2.47)

0 – 7 3.42 (1.91)

1 – 7 1.75 (1.50)

1 – 4 General Health

Problems 4.96 (1.86) 0 – 7

5.74 (1.42)2 – 7

4.60 (2.40) 0 – 7

3.29 (1.73) 1– 7

1.75 (1.50) 1 – 4

Shorter Life 3.49 (2.07)

0 – 7 3.94 (2.32)

0 – 7 2.48 (2.42)

0 – 7 2.58 (1.77)

0 – 7 1.25 (1.26)

0 – 3

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Hypothesis 9: Patients’ (pre-treatment) expectations about scoliosis are different from

their Parents’ (pre-treatment) expectations about scoliosis. Patients were matched with

their parents. (See Table 8.5 & Figure 8.4)

Patient's vs Parents' Expectations of Scoliosis (Natural History)

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0.006

0.307

0.122

0.073

-0.04

0.327

0.209

0.232

0.34

0.551

0.335

0.19

0.199

Pearson Correlation

Patient vs.

Parent

-0.6

0.012

-0.32

0.157

-0.53

0.047

-0.66

0.014

-0.83

0.014

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Mean Difference

(paired t-test)

p-value (Sig. 2-

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Figure 8.4 Mean likelihood of consequences with 95% confidence intervals based on patients’, parents’ beliefs about the likelihood of consequences of scoliosis, arranged in descending order of likelihood from the children’s perspective.

Overall, parents had similar expectations as patients. There was a close correlation

between the mean expectation scores of parents and children (r = 0.92). However,

when parents’ expectations were compared with their respective children’s expectations

for each of the items, there was very poor correlation for most consequences. (See

Figure 8.4) Parents consistently believed that there was a greater likelihood (probability

of occurrence) of all the listed items occurring in the future if their child’s scoliosis was

143

not treated, than their children. These differences were all statistically significant, with

the exception of expectations of a shorter life (p = 0.27); future back pain (p = 0.157), &

sexual problems (p = 0.071)

In order to determine parents’ knowledge of their children’s perspective on the natural

history of scoliosis, parents also reported their perception of their child’s expectations of

each of the consequences, which was compared with their child’s report of expectations.

Hypothesis 10: Patients’ (pre-treatment) expectations about scoliosis are different from

their Parents’ perception of their child’s (pre-treatment) expectations about scoliosis.

Patients' Expectations vs Parents' Perception of Child's Expectations

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0.298

0.159

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0.335

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0.116

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Pearson Correlation

Patient vs.

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0.115

0.68

0.462

0.14

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0.269

0.46

0.038

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0.51

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0.009

0.27

0.42

Mean Difference

(paired t-test)

p-value (Sig. 2-

tailed)

Figure 8.5 Mean likelihood of consequences with 95% confidence intervals based on patients’, parents’ perception of their children’s beliefs.

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Parents’ perceptions of their children’s expectations were remarkably similar to their

children’s actual beliefs. The mean differences for all items were very small (clinically

insignificant) and statistically not significant, with one exception. Parents

underestimated their children’s beliefs about the likelihood of a “shorter life” as a

consequence of untreated scoliosis by 1 level (p = 0.009). Even children, however,

believed this was an unlikely consequence of scoliosis. (See Table 8.5 & Figure 8.5)

Hypothesis 11: Patient’s and Parents’ expectations of the natural history of scoliosis

are different from Surgeon’s expectations of the natural history.

Patient’s and Parents’ expectations of the natural history of untreated scoliosis were

compared with surgeons’ perceptions of the natural history. Comparisons were made

between patients and their respective surgeons (HSC surgeons); and between parents

and their children’s surgeons (HSC Surgeons), using repeated measures analysis of

variance and paired t-tests. Therefore, each HSC surgeon’s responses were matched to

their respective patients and their parents. (See Table 8.5)

Patients believed there was a much higher likelihood of occurrence for the items listed,

than their respective surgeons. These differences were all large and statistically

significant (p < 0.0005), with the exception of patients’ perception of the likelihood of

“worsening physical appearance”, and “future emotional problems”, which were not

significantly different from the surgeons’ beliefs. (See Table 8.5. & Figure 8.6)

Parents believed there was an even higher likelihood of all the consequences listed than

the respective surgeons and these differences were all statistically significant (p

<0.0005), with the exception of the likelihood of “worsening physical appearance”, where

the difference was smaller (0.76; p=0.004). (See Table 8.5 & Figure 8.6)

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Patient's, Parents' & Surgeons' Expectations of Scoliosis (Natural History)

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0.208

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Mean Difference

(paired t-test)

p-value (Sig. 2-

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Figure 8.6 Mean likelihood of consequences with 95% confidence intervals based on patients’, parents’ and surgeons’ beliefs.

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8.2 Expectations of Desired Outcomes of Surgery for Scoliosis

Aim 5 of the thesis was to describe and compare patients’, parents’ and surgeons’

expectations of desired outcomes of surgery for scoliosis. Expectations of surgery for

scoliosis were operationalized in two ways.

A. Likelihood or Probability of a Desired Result (Expectancy)

First, patients and parents were asked to report how likely they thought that surgery

would accomplish each of the 21 listed goals. Their perception of the likelihood of each

item occurring was rated on an 8-point ordinal rating scale ranging from “Never: 0%” (0)

to “extremely likely: >95%” (7). In order to measure surgeons’ perception of the

expected outcomes of surgery, surgeons were asked to report the likelihood of each of

the same listed events using the same rating scale.

B. Minimal Acceptable Result to be Satisfied (Value)

Second, patients and parents were asked to report the minimal acceptable result for

them to be satisfied. Minimal acceptable result was defined as the minimum change in

each item (magnitude of improvement or reduction of future risk) due to surgery that

would satisfy the patient or parent. This was rated on a 6-point ordinal scale ranging

from 0 (“no change”) to 5 (“very large change”) for each of the 21 listed goals/items.

Means and standard deviations of the patients’, parents’ and surgeons’ Expectations of

Desired Outcomes of Surgery for Scoliosis were determined using the Index of

Expectations for (a) All, (b) Immediate, and (c) Future expectations of surgery as well as

the expectations for each of the 5 domains: (i) physical appearance, (ii) pain, (iii)

physical function, (iv) psychosocial function, and (v) health, as well as for all individual

items. Means and standard deviations of the patients’ and parents’ Minimal Acceptable

Result were determined for all 21 goals/items.

147

8.2.1 Patients’ Expectations of Surgery

A. Likelihood of a Desirable Result

Patients reported a wide range in their overall (prior) expectations of surgery. The

magnitude of overall expectations as measured by the mean Index of All Expectations

was 54.21 (out of 100). Patients’ perception of the likelihood of surgery accomplishing

more present or immediate goals, Index of Immediate Expectations (55.23) was not

different from their perception of the likelihood of future goals, Index of Future

Expectations (53.59). Patients’ desired expectations were greatest in the domains of

Physical Appearance (84.16) and Pain prevention/relief (70.30). (See Table 8.6 &

Figure 8.7).

Table 8.6 Patients’ Expectations of (Desirable) Outcomes of Surgery for Scoliosis All PATIENTS

Means (Std Dev) Range

GIRLS Means (Std Dev)

Range

BOYS Means (Std Dev)

Range

DIFFERENCE(t – test) p - value

All Expectations

54.21 (15.81)

23.81 - 89.80

53.13 (15.52) 23.81 - 85.71

60.93 (17.30)

37.41 - 89.80 0.23

Present Expectations

55.23 (17.10)

23.21 - 96.43 54.54 (16.15)

23.21 - 85.71 59.95 (23.60)

28.57 - 96.43 0.44

Future Expectations

53.59 (17.67)

16.48 - 85.71

52.27 (17.60)

16.48 - 85.71 61.54 (16.45)

40.66 - 85.71 0.20

Appearance Expectations

84.16 (13.02)

42.86 - 100

84.82 (13.15)

42.86 - 100 79.59 (11.97)

57.14 - 92.86 0.33

Pain Expectations

70.30 (20.94)

0 - 100

70.83 (18.26)

28.57 - 100 66.67 (36.27)

0 - 100 0.63

Function Expectations

52.47 (18.50)

20.00 - 97.14

51.13 (18.54)

20.00 - 85.71 61.63 (16.65)

45.71 - 97.14 0.16

Psychosocial Expectations

40.00 (26.14)

0 - 100.00

37.54 (25.64)

0 - 89.80 56.85 (24.87)

20.41 - 100 0.07

Health Expectations

54.22 (25.78)

0 - 89.29

53.79 (27.01)

0 - 89.29 53.57 (15.43)

28.57 – 75.00 0.98

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Patients' Expectations of Desirable Outcomes of Surgery

0.0010.0020.0030.0040.0050.0060.0070.0080.0090.00

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Figure 8.7 Patients’ mean level of expectations overall and by domain with 95% confidence intervals.

Analyzed by individual goals/items, patients reported a wide range (0 – 7) in their

perceptions of the likelihood that surgery would accomplish almost all items/goals.

Patients’ highest expectations of surgery (mean score out of a maximum of 7; std. dev.)

were:

i. Prevent worsening of physical appearance (6.02; 0.93): 78% (43/55) patients

believed that surgery was either “very likely” or “extremely likely” to prevent

deterioration in their appearance;

ii. Improve physical appearance (5.76; 1.02): 65% (36/55) patients believed that

surgery was either “very likely” or “extremely likely” to improve their physical

appearance;

iii. Eliminate need for a brace (5.53; 2.17): 71% (39/55) believed that surgery was

either “very likely” or “extremely likely” to eliminate their need to wear a brace in

the future.

149

iv. Prevent future back pain (5.24; 1.69): 51% (28/55) believed that surgery was

either “very likely” or “extremely likely” to prevent them from developing back pain

in the future because of their scoliosis.

v. Prevent future health problems (4.71; 2.01) & Prevent future lung and heart

problems (4.45; 2.41): 40% (22/55) believed that surgery was either “very likely”

or “extremely likely” to prevent future health problems due to scoliosis while 45%

(25/55) believed that surgery was either “very likely” or “extremely likely” to

prevent future lung and heart problems.

vi. Decrease current back pain (4.00; 2.70): 40% (22/55) believed that surgery was

either “very likely” or “extremely likely” to decrease current back pain.

Overall patients reported their lowest expectations of surgery (least likelihood of benefit)

on present relationships; prevention of future problems with sexual function; future

relationships; and employment. They also thought it unlikely that surgery would prevent

problems with pregnancy or childbirth; prevent or improve present or future emotional

problems; or prolong life. However, at least some patients, between 4/55 (7%) and

13/55 (24%) believed that surgery was either “very likely” or “extremely likely” to

accomplish these goals, although in aggregate these goals were perceived to be least

likely to occur.

The boys in this cohort had similar expectations of surgery as the girls, sharing eight of

the top ten expectations. Boys had significantly higher expectations that surgery would

prevent restriction of future physical activity (p = 0.04) and future participation in

sports/recreation (p = 0.03). They also had higher expectations that surgery would

prevent future loss of self esteem. This was in keeping with the finding that boys

reported greater concern about loss of self esteem due to scoliosis, than girls.

150

B. Minimal Acceptable Result to be Satisfied

Patients reported a wide range of what minimal acceptable result or change they would accept to

be satisfied (0 – 5 for all items/goals listed). On average, they reported relatively modest

expectations of surgery based on the minimum change (magnitude of improvement or reduction

of future risk) they would accept to be satisfied with surgery. (See Table 8.7 & Figure 8.8)

Their top five priorities (mean level out of 5; standard deviation) were:

i. Prevent worsening physical appearance (3.76; 0.96): 69% (38/55) of patients reported

that they would only be satisfied with a “large” (50% - 75%) or “very large” (>75%)

reduction in the risk of future worsening appearance following surgery;

ii. Prevention of future back pain (3.48; 1.11): 49% (27/55) of patients reported that it would

take a “large” (50% - 75%) or “very large” (>75%) reduction in the risk of future back pain

to be satisfied with their operation;

iii. Improvement of physical appearance (3.22; 1.26): 44% (24/55) of patients reported that it

would require a “large” (50% - 75%) or “very large” (>75%) improvement of their

appearance for them to be satisfied with surgery;

iv. Prevention of lung & heart problems (3.13; 1.69) and prevention of future general health

problems (3.13; 1.54): 50% of patients would accept nothing less than a “large” (50% -

75%) or “very large” (>75%) reduction in the risk of future lung & heart problems or general

health problems;

v. Elimination of brace (3.04; 2.21): 60% (33/55) of patients accept nothing less than a

“large” (50% - 75%) or “very large” (>75%) reduction in the risk of having to wear a brace

in the future.

For the remainder of the items the average minimal acceptable change for satisfaction was <

25%. However, between 31% and 35% of patients reported that they would accept nothing less

than a “large” (50% - 75%) or “very large” (>75%) improvement or reduction in the risk of

151

restriction of future physical activities; restriction of future recreation; problems with future self

esteem; early death; and current back pain.

Table 8.7 Patients’ Expectations of Surgery: Minimal Acceptable Result to be Satisfied

ALL PATIENTS Mean (Std. Dev)

Range

GIRLS Mean (Std. Dev)

Range

BOYS Mean (Std. Dev)

Range

DIFFERENCE (t- test) p value

Future Appearance

3.76 (0.96) 1 - 5

3.90 (0.81) 2 – 5

2.86 (1.46) 1 – 4

0.006

Future Pain

3.48 (1.11) 0 – 5

3.49 (1.12) 0 – 5

3.43 (1.13) 2 – 5

0.894

Present Appearance

3.22 (1.26) 0 – 5

3.27 (1.18) 0 – 5

2.86 (1.77) 0 – 5

0.421

Lung/Heart Problems

3.13 (1.69) 0 - 5

3.15 (1.69) 0 – 5

3.00 (1.83) 0 – 5

0.833

Health Problems

3.13 (1.54) 0 – 5

3.08 (1.57) 0 – 5

3.43 (1.40) 2 – 5

0.584

Brace 3.04 (2.21)

0 – 5 3.04 (2.22)

0 – 5 3.00 (2.31)

0 – 5 0.963

Future

Function 2.89 (1.26)

0 – 5 2.83 (1.28)

0 – 5 3.29 (1.11)

2 – 5 0.379

Future

Recreation 2.76 (1.33)

0 – 5 2.69 (1.36)

0 – 5 3.29 (1.11)

2 – 5 0.271

Future

Self Esteem 2.36 (1.66)

0 – 5 2.23 (1.65)

0 – 5 3.29 (1.50)

1 – 5 0.116

Early

Mortality 2.31 (1.77)

0 – 5 2.27 (1.78)

0 – 5 2.57 (1.81)

0 – 5 0.679

Present

Pain 2.25 (1.67)

0 – 5 2.33 (1.62)

0 – 5 1.71 (2.06)

0 – 5 0.364

Present

Self Esteem 2.04 (1.59)

0 – 5 2.08 (1.57)

0 – 5 1.71 (1.80)

0 – 5 0.570

Future

Emotions 1.91 (.170)

0 – 5 1.77 (1.63)

0 – 5 2.86 (1.95)

0 – 5 0.113

Present

Function 1.87 (1.43)

0 – 5 1.81 (1.41)

0 – 4 2.29 (1.60)

0 - 5 0.415

Present

Recreation 1.84 (1.41)

0 – 5 1.81 (1.44)

0 – 5 2.00 (1.29)

0 – 4 0.746

Present Emotion

1.67 (1.58) 0 – 5

1.69 (1.55) 0 – 5

1.57 (1.90) 0 – 5

0.858

Pregnancy/ Childbirth

1.56 (1.65) 0 – 5

1.75 (1.67) 0 – 5

N/A

Employment

1.47 (1.43) 0 – 5

1.50 (1.38) 0 – 5

1.29 (1.80) 0 – 5

0.714

Future Relationships

1.25 (1.53) 0 – 5

1.15 (1.47) 0 – 5

2.00 (1.83) 0 – 5

0.170

Sexual Function

1.20 (1.53) 0 – 5

1.21 (1.50) 0 – 5

1.14 (1.86) 0 – 5

0.917

Present Relationships

0.91 (1.34) 0 – 5

0.94 (1.37) 0 – 5

0.71 (1.11) 0 – 3

0.684

Patients’ highest expectations based on minimal acceptable result are highlighted in red.

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Boys were willing to accept a smaller reduction in the risk of future deterioration of their physical

appearance than girls and this difference was statistically significant (p = 0.006). The boys,

reported higher expectations of surgery than girls for goals pertaining to future physical activities,

sports and recreation and future self esteem. These differences did not reach statistical

significance. In all other respects the girls and boys of this cohort had similar expectations,

sharing four of the top six priorities. (See Table 8.7 & Figure 8.8)

Patients' Expectations of Surgery: Minimal Acceptable Results

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ALL PATIENTS GIRLS BOYS

Figure 8.8 Patients’ mean level of minimal acceptable change (magnitude of improvement or reduction of future risk) with standard deviations, arranged in decreasing order. Threshold level of 3 indicates a “moderate change” (25% - 50%).

Moderate Change (25% - 50%)

153

8.2.2 Parents’ Expectations of Surgery

A. Likelihood of a Desirable Result

Parents reported a wide range in their overall (prior) expectations of surgery for their

children. The magnitude of overall expectations as measured by the mean Index of All

Expectations was 63.60 (out of 100). Parents’ perception of the likelihood of surgery

accomplishing more present or immediate goals, Index of Immediate Expectations

(60.75) was not different from their perception of the likelihood of future goals, Index of

Future Expectations (65.35). Parents’ desired expectations were greatest in the

domains of Physical Appearance (89.08) and to a lesser extent Pain prevention/relief

(66.40) and Health expectations (66.51) (See Table 8.8 & Figure 8.9).

Table 8.8 Parents’ Expectations of (Desirable) Outcomes of Surgery for Scoliosis All PARENTS

Means (Std Dev) Range

GIRLS’ PARENTS Means (Std Dev)

Range

BOYS’ PARENTS Means (Std Dev)

Range

DIFFERENCE (t – test) p - value

All Expectations

63.60 (13.17)

34.69 – 90.48

64.54 (12.90)

34.69 – 90.48 57.43 (14.24)

41.50 – 78.91 0.19

Present Expectations

60.75 (16.96)

23.21 – 100

62.73 (15.87)

30.36 – 100 47.70 (19.36)

23.21 – 67.86 0.0275

Future Expectations

65.35 (13.71)

29.67 – 86.81

65.65 (13.56)

29.67 – 86.81 63.42 (15.65)

39.56 – 85.71 0.69

Appearance Expectations

89.08 (10.63)

57.14 – 100

89.91 (10.71)

57.14 – 100 83.67 (8.95)

71.43 – 100 0.15

Pain Expectations

66.40 (21.99)

0 – 100 68.32 (22.09)

0 – 100 53.74 (17.76)

33.33 – 80.95 0.10

Function Expectations

57.95 (18.46)

8.57 – 91.43

59.75 (15.97)

31.43 – 91.43 46.12 (29.20)

8.57 – 88.57 0.068

Psychosocial Expectations

57.49 (21.04)

0 – 89.80

57.54 (21.40)

0 – 87.76 57.14 (20.00)

36.73 – 89.80 0.96

Health Expectations

66.51 (19.46)

0 – 100 67.24 (20.39)

0 – 100 61.73 (11.61)

42.86 – 75.00 0.49

154

Parents' Expectations of Desirable Outcomes of Surgery

0.00

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GIRLS' PARENTSBOYS' PARENTS

Figure 8.9 Parents’ mean level of expectations overall and by domain with 95% confidence intervals.

Analyzed by individual item, parents reported a wide range (0 – 7) in their perceptions of

the likelihood that surgery would accomplish most items/goals for their children.

Parents’ highest expectations of surgery (mean score out of a maximum of 7; std. dev.)

were:

i. Prevent worsening of physical appearance (6.26; 0.88): 81% (43/53) parents

believed that surgery was either “very likely” or “extremely likely” to prevent

deterioration in their child’s appearance.

ii. Improve physical appearance (6.21; 1.02): 81% (43/53) parents believed that

surgery was either “very likely” or “extremely likely” to improve their child’s

physical appearance at the time. The remainder of parents believed it was likely

(> 50% chance), with no parent rating the likelihood of this item < 5 out of 7.

iii. Prevent future lung and heart problems (5.90; 1.56) & Prevent future health

problems (5.62; 1.71): 74% (39/53) of parents believed that surgery was either

155

“very likely” or “extremely likely” to prevent future lung and heart problems due to

scoliosis while 68% (36/53) believed that surgery was either “very likely” or

“extremely likely” to prevent future health problems for their child.

iv. Prevent future back pain (5.36; 1.65): 58% (31/53) of parents believed that

surgery was either “very likely” or “extremely likely” to prevent their child from

developing back pain in the future because of their scoliosis.

v. Prevent restriction of future physical activities (5.0; 1.37): 36% (19/53) parents

believed that surgery was either “very likely” or “extremely likely” to prevent their

child from having restricted physical activities in the future

vi. Prevent future loss of self esteem (4.85; 1.75), prevent future emotional problems

(4.81; 1.82), and improve present self esteem (4.77; 1.89) were all believed by

42% (22/53) of parents to be either “very likely” or “extremely likely” to occur as a

result of surgery;

vii. Eliminate need for a brace (4.72; 2.90): 60% (32/53) of parents believed that

surgery was either “very likely” or “extremely likely” to eliminate the need for their

child to wear a brace in the future.

Overall parents reported their lowest expectations of surgery (least likelihood of benefit)

on prevention of future problems with sexual function; present relationships; prevention

of problems with pregnancy or childbirth and improvement of current recreation. On

average, they also thought that surgery had a less than 25% chance of improving

current back pain; improving current physical activities; prevent future relationship

problems; or improve employment prospects. However, a significant proportion of

parents, between 9/53 (17%) and 22/53 (42%) believed that surgery was either “very

likely” or “extremely likely” to accomplish these goals for their child.

156

The parents of boys in this cohort had similar expectations of surgery as the girls’

parents, sharing nine of the top ten individual expectations. Girls’ parents had higher set

of immediate (present) expectations of surgery than boys’ parents (p = 0.028). See

Table 8.8 & Figure 8.9.

B. Minimal Acceptable Result to be Satisfied

Parents reported a wide range of what minimal acceptable result or change (magnitude of

improvement or reduction of future risk) they would accept to be satisfied with surgery for their

child. (See Table 8.9 & Figure 8.10) Their top five priorities (mean level out of 5; standard

deviation) were:

i. Prevent worsening physical appearance (4.13; 0.86): 83% (44/53) of parents reported that

they would only be satisfied with a “large” (50% - 75%) or “very large” (>75%) reduction in

the risk of future worsening appearance following surgery for their child;

ii. Prevention of future general health problems (3.75; 1.28) and Prevention of lung & heart

problems (3.68; 1.48): 70% of parents (37/53) would be satisfied with nothing less than a

“large” (50% - 75%) or “very large” (>75%) reduction in the risk of their child’s future

general health problems or lung & heart problems;

iii. Prevention of future back pain (3.60; 1.03): 66% (35/53) of parents reported that it would

take a “large” (50% - 75%) or “very large” (>75%) reduction in the risk of their child’s future

back pain to be satisfied with surgery for their child;

iv. Improvement of physical appearance (3.49; 0.85): 51% (27/53) of parents reported that it

would require a “large” (50% - 75%) or “very large” (>75%) improvement of their child’s

appearance for them to be satisfied with surgery;

v. Prevent loss of future self esteem (3.09; 1.43): 43% (23/53) parents reported that it would

require a “large” (50% - 75%) or “very large” (>75%) reduction in the risk of future loss of

their child’s self esteem to satisfied with the results of surgery.

157

Table 8.9 Parents’ Expectations of Surgery: Minimal Acceptable Result to be Satisfied

ALL PARENTS Mean (Std. Dev)

Range

GIRLS’ PARENTS Mean (Std. Dev)

Range

BOYS’ PARENTS Mean (Std. Dev)

Range

DIFFERENCE (t- test) p value

Future Appearance

4.13 (0.86) 1 – 5

4.13 (0.86) 1 – 5

4.14 (0.90) 3 – 5 0.4

Health 3.75 (1.28)

0 – 5 3.74 (1.32)

0 – 5 3.86 (1.07)

2 – 5 0.54

Lung/Heart 3.68 (1.48)

0 – 5 3.65 (1.51)

0 – 5 3.86 (1.35)

2 – 5 0.67

Future Pain 3.60 (1.03)

1 – 5 3.65 (0.97)

1 – 5 3.17 (1.47)

1 – 5 0.54 Present

Appearance 3.49 (0.85)

1 – 5 3.57 (0.83)

1 – 5 3.00 (0.82)

2 – 4 0.059 Future Self

Esteem 3.09 (1.43)

0 – 5 3.07 (1.47)

0 – 5 3.29 (1.25)

2 – 5 0.64 Future

Function 3.00 (1.05)

1 – 5 3.00 (1.11)

1 – 5 3.00 (0.58)

2 – 4 0.241

Mortality 2.91 (1.93)

0 – 5 2.74 (1.97)

0 – 5 4.00 (1.29)

2 – 5 0.25

Brace 2.89 (2.17)

0 – 5 3.11 (2.07)

0 – 5 1.43 (2.44)

0 – 5 0.58 Future

Emotions 2.89 (1.50)

0 – 5 2.91 (1.50)

0 – 5 2.71 (1.60)

0 – 5 0.84 Present Self

Esteem 2.60 (1.55)

0 – 5 2.65 (1.55)

0 – 5 2.29 (1.60)

0 – 5 0.61 Future

Recreation 2.45 (1.20)

0 – 5 2.48 (1.26)

0 – 5 2.29 (0.76)

1 – 3 0.311 Present

Pain 2.27 (1.82)

0 – 5 2.51 (1.82)

0 – 5 0.71 (0.76)

0 – 2 0.062 Present Emotion

2.26 (1.56) 0 – 5

2.33 (1.56) 0 – 5

1.86 (1.57) 0 – 4 0.3

Pregnancy/ Childbirth

2.21 (1.71) 0 – 5

2.54 (1.59) 0 – 5

N/A N/A

Employment 2.09 (1.58)

0 – 5 1.96 (1.50)

0 – 5 3.00 (1.91)

0 – 5 0.77 Future

Relationships 2.06 (1.49)

0 – 5 2.02 (1.51)

0 – 5 2.29 (1.38)

0 – 4 0.78 Present

Function 1.79 (1.38)

0 – 4 1.93 (1.39)

0 – 4 0.86 (0.90)

0 – 2 0.061 Sexual

Function 1.69 (1.64)

0 – 5 1.74 (1.67)

0 – 5 1.33 (1.51)

0 – 3 0.18 Present

Recreation 1.53 (1.23)

0 - 4 1.65 (1.23)

0 – 4 0.71 (0.95)

0 – 2 0.065 Present

Relationships 1.19 (1.27)

0 - 4 1.15 (1.25)

0 – 4 1.43 (1.51)

0 – 4 0.39 Parents’ highest expectations based on minimal acceptable result are highlighted in red.

158

Parents had more modest expectations for the remainder of the goals/items, with the average

minimal acceptable change of < 25%. However, a significant proportion of parents reported that

they would accept nothing less than a “large” (50% - 75%) or “very large” (>75%) improvement or

reduction in the risk of future brace wear (29/53); early death (25/53); problems with future

emotions (23/53); current back pain (21/53); restriction of future physical activities (17/53); present

self esteem (16/53); present emotional problems (15/53); and problems with future pregnancy or

childbirth (15/53).

Parents' Expectations of Surgery: Minimal Acceptable Results

0

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ALL PARENTS GIRLS' PARENTS BOYS' PARENTS

Figure 8.10 Parents’ mean level of minimal acceptable change (magnitude of improvement or reduction of future risk) with standard deviations, arranged in decreasing order. Threshold level of 3 indicates a “moderate change” (25% - 50%).

Moderate Change (25% - 50%)

159

The expectations of the parents of girls were similar to those parents of boys with

scoliosis, sharing the same top six priorities. Boys’ parents were willing to accept a

more modest improvement in their child’s current physical appearance (p = 0.06);

current back pain (p=0.06) and current physical activities (p =0.06) than girls’ parents.

(See Table 8.9 & Figure 8.10)

8.2.3 Surgeons’ Expectations of Scoliosis Surgery

Surgeons’ perceptions about the expected outcomes of surgery were measured by

asking them to report how likely they thought surgery would satisfactorily accomplish

each of the 21 listed goals, rated on an 8-point ordinal rating scale ranging from “Never:

0%” (0) to “extremely likely: >95%” (7). Means and standard deviations of the surgeons’

Expectations of Desirable Outcomes of Surgery for Scoliosis were determined using the

Index of Expectations for (a) All, (b) Immediate, and (c) Future expectations of surgery

as well as the expectations for each of the 5 domains: (i) physical appearance, (ii) pain,

(iii) physical function, (iv) psychosocial function, and (v) health, as well as for all

individual items. The results were also stratified by whether the respondent was a

surgeon from the Hospital for Sick Children (HSC Surgeon) or not (All other Canadian

Surgeons). (See Table 8.10 & Figure 8.11)

Analyzed by item, Canadian surgeons believed that surgery was most likely to

satisfactorily accomplish the following outcomes (mean score out of 7; std. dev.):

i. Improve present physical appearance (6.33; 0.64) and prevent worsening of

physical appearance (6.21; 0.59): 92% (22/24) of all Canadian scoliosis surgeons

surveyed reported that surgery these was either “very likely” or “extremely likely”

to improve their patients’ current physical appearance and prevent it from

worsening in the future.

160

ii. Eliminate need for brace (5.43; 2.29): 71% (17/24) surgeons believed that

surgery was either “very likely” or “extremely likely” to accomplish this outcome.

iii. Improve present self-esteem (5.17; 1.11): 38% (9/24) surgeons believed that

surgery was either “very likely” or “extremely likely” to improve their patients’

current self esteem.

iv. Improve current emotions (4.92; 1.06), prevent loss of future self-esteem (4.74;

1.29), and prevent future emotional problems (4.61; 1.27): Although on average,

surgeons believe these outcomes were likely, only 4 (17%) to 6 (25%) out of the

24 surgeons reported that these were either “very likely” or “extremely likely” to

occur as a result of surgery.

v. Prevention of future lung/heart problems (4.04; 1.99): 21% (5/24) of surgeons

reported that surgery was either “very likely” or “extremely likely” to prevent future

problems related to the lung or heart.

Prevention of problems with sexual function, pregnancy/childbirth, improvement in

current recreation or physical activities and prevention of early mortality were believed to

be the least likely outcomes of surgery for scoliosis, with 54% to 75% of all surgeons

reporting that these outcomes were “very unlikely”, “extremely unlikely” or “never”.

161

Table 8.10 Surgeons’ Expectations of Outcomes of Surgery for Scoliosis All

SURGEONS Means (Std Dev) Range (n = 24)

NON HSC SURGEONS

Means (Std Dev) Range (n = 20)

HSC SURGEONS Means (Std Dev)

Range (n = 4)

DIFFERENCE

(t – test) p - value

All Expectations

51.53 (12.32)

28.57 – 72.11

54.12 (10.98)

31.29 - 72.11

38.61 (11.58)

28.57 - 55.10

0.0178

Present Expectations

58.18 (11.50)

35.71 – 83.93

60.27 (11.02)

42.86 - 83.93

47.77 (8.42)

35.71 - 55.36

0.0444

Future Expectations

47.44 (14.02)

23.08 – 71.43

50.33 (12.25)

24.18 - 71.43

32.97 (14.93)

23.08 - 54.95

0.0201

Appearance Expectations

89.58 (6.98)

78.57 – 100

90.00 (6.72)

78.57 - 100

87.50 (8.99)

78.57 - 100

0.5252

Pain Expectations

59.13 (17.19)

19.05 – 85.71

60.95 (18.06)

19.05 - 85.71

50.00 (8.25)

38.10 - 57.14

0.2536

Function Expectations

38.93 (16.72)

0 – 71.43

43.14 (13.46)

14.29 - 71.43

17.86 (16.88)

0 - 40.00

0.0032

Psychosocial Expectations

52.98 (17.39)

8.16 – 81.63

54.69 (17.63)

8.16 - 81.63

44.39 (15.31)

24.49 - 61.22

0.2893

Health Expectations

40.03 (19.87)

0 – 85.71

43.75 (17.91)

14.29 - 85.71

21.43 (21.03)

0 - 50.00

0.0371

Analyzed by domain, surgeons’ believed that satisfactory outcomes in the physical

appearance domain had the highest likelihood of occurrence. This was true of all

surgeons. However, surgeons reported a wide range in their perception of the likelihood

of outcomes in all other domains. Surgeons from the Hospital for Sick Children reported

significantly lower expectations than the rest of their Canadian counterparts. There was

also a wide range of expectations among the four HSC surgeons. (See Table 8.10 &

figure 8.11)

162

Surgeons' Expectations of Outcomes of Scoliosis Surgery

0.010.020.030.040.050.060.070.080.090.0

100.0To

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Figure 8.11 Surgeons’ perception of the likelihood of outcomes of scoliosis surgery with 95% confidence intervals. Comparison of HSC surgeons with all other Canadian surgeons.

8.2.4 Comparison of Patients’, Parent’s and Surgeons’ Expectations of Surgery

Patients were matched with their parents and their treating surgeon. Repeated

measures analysis of variance and paired t- tests were used to compare mean scores of

expectations of (i) Patients, (ii) Parents, and their treating (iii) HSC Surgeons. Analysis

of variance and student t-tests were used when the mean scores of Patients’, Parents’

and ALL Surgeons’ expectations were compared. (See Table 8.11)

163

Table 8.11 Patients’, Parents’ & Surgeons’ Expectations of (Desirable) Outcomes All PATIENTS

Means (Std Dev) Range

ALL PARENTS Means (Std Dev)

Range

ALL SURGEONS Means (Std Dev)

Range

HSC SURGEONSMeans (Std Dev)

Range

All Expectations

54.21 (15.81)

23.81 - 89.80

63.60 (13.17)

34.69 – 90.48

51.53 (12.32)

28.57 – 72.11

38.61 (11.58)

28.57 - 55.10

Present Expectations

55.23 (17.10)

23.21 - 96.43 60.75 (16.96)

23.21 – 100

58.18 (11.50)

35.71 – 83.93

47.77 (8.42)

35.71 - 55.36

Future Expectations

53.59 (17.67)

16.48 - 85.71

65.35 (13.71)

29.67 – 86.81

47.44 (14.02)

23.08 – 71.43

32.97 (14.93)

23.08 - 54.95

Appearance Expectations

84.16 (13.02)

42.86 - 100

89.08 (10.63)

57.14 – 100

89.58 (6.98)

78.57 – 100

87.50 (8.99)

78.57 - 100

Pain Expectations

70.30 (20.94)

0 - 100

66.40 (21.99)

0 – 100 59.13 (17.19)

19.05 – 85.71

50.00 (8.25)

38.10 - 57.14

Function Expectations

52.47 (18.50)

20.00 - 97.14

57.95 (18.46)

8.57 – 91.43

38.93 (16.72)

0 – 71.43

17.86 (16.88)

0 - 40.00

Psychosocial Expectations

40.00 (26.14)

0 - 100.00

57.49 (21.04)

0 – 89.80

52.98 (17.39)

8.16 – 81.63

44.39 (15.31)

24.49 - 61.22

Health Expectations

54.22 (25.78)

0 - 89.29

66.51 (19.46)

0 – 100 40.03 (19.87)

0 – 85.71

21.43 (21.03)

0 - 50.00

Hypothesis 12: Patients’ (pre-treatment) expectations of surgery for scoliosis are

different from parents’ (pre-treatment) expectations of surgery.

Except for the domains of pain and physical appearance, parents believed there was a

greater likelihood (probability) that surgery would result in benefits than their children

reported. Parents’ had significantly greater overall expectations of surgery (p = 0.0005),

expectations of more immediate benefits (present) (p = 0.04), expectations of future

benefits (p = 0.0001), expectations in the psychosocial domain (p < 0.0001) and the

health domain (0.008). (See Table 8.11 & Figure 8.12).

164

Patients' vs Parents' Expectations of Desirable Outcomes of Surgery

0.010.020.030.040.050.060.070.080.090.0

100.0To

tal

Exp

ecta

tions

Pre

sent

Exp

ecta

tions

Futu

reE

xpec

tatio

ns

App

eara

nce

Exp

ecta

tions

Pai

nE

xpec

tatio

ns

Func

tion

Exp

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tions

Psy

chos

ocia

lE

xpec

tatio

ns

Hea

lthE

xpec

tatio

ns

Mea

n In

dex

PATIENTS PARENTS

Patient

vs Parent

- 9.21

p=0.0005

- 5.19

p=0.043

- 11.67

p=0.0001

- 4.45

p=0.063

4.31

p=0.135

- 5.01

p=0.116

- 17.40

p=0.000

- 12.60

p=0.008

Mean Diff. Significance (2-tailed)

Figure 8.12 Mean index of expectations (likelihood) of desirable outcomes is presented for patients and their parents along with 95% confidence intervals. The mean differences for the paired comparisons are provided along with the 2-tailed significance level.

Patients reported similar order of priorities as their parents in terms of expectations of

surgery based on what they felt was the minimal acceptable change (for each item/goal)

following surgery that would be necessary to satisfy them. However, parents once again

reported greater expectations (larger benefits) than their children. The differences were

significant for a number of items. (See Figure 8.13)

165

Patients' vs Parents Expectations of Surgery: Minimal Acceptable Result

0

1

2

3

4

5

Futu

re A

ppea

ranc

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Futu

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Pre

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App

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Lung

/Hea

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Hea

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Futu

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Futu

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ecre

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Futu

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stee

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Pre

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Pai

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Pre

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Sel

f Est

eem

Futu

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mot

ions

Pre

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Fun

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Pre

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Rec

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ion

Pre

sent

Em

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Pre

gnan

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Em

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Futu

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ions

hips

Sex

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Pre

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Rel

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Leve

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hang

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PATIENTS PARENTS

Figure 8.13 Patients’ & Parents’ mean level of minimal acceptable change (magnitude of improvement or reduction of future risk) with standard deviations, arranged in decreasing order by patients’ priorities. Threshold level of 3 indicates a “moderate change” (25% - 50%). Significant differences (p-values) are highlighted in red.

Hypothesis 13: Patients’ and Parents’ (pre-treatment) expectations of surgery for

scoliosis are different from surgeons’ (pre-treatment) expectations of surgery.

Patients were compared with their respective surgeons. Patients believed there was a

significantly larger likelihood that surgery would benefit them overall, for more immediate

as well as future benefits. Patients were identical to their surgeons’ with respect to their

psychosocial expectations of surgery. Although expectations were greatest for patients

0.03

0.02 0.01

0.004

0.008

0.001 All < 0.04

Moderate Change (25% - 50%)

166

and surgeons in the physical appearance domain, surgeons reported significantly

greater expectations in the physical appearance domain than their patients (p < 0.0001).

Patients', Parents' & Surgeons' Expectations of Surgery

.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

TotalExpectations

PresentExpectations

FutureExpectations

AppearanceExpectations

PainExpectations

FunctionExpectations

PsychosocialExpectations

HealthExpectations

Mea

n In

dex

CHILDPARENTSURGEON

Patient

vs Surgeon

22.99

p<0.0001

11.15

p<0.0001

30.27

p<0.0001

- 9.64

p<0.0001

23.9

p<0.0001

47.28

p<0.0001

1.42

p=0.68

46.02

p<0.0001

Mean Diff. Signific. (2-tailed)

Parent vs

Surgeon

31.67

p<0.0001

16.07

p<0.0001

41.26

p<0.0001

- 5.18

p=0.007

18.95

p<0.0001

52.77

p<0.0001

17.93

p<0.0001

57.28

p<0.0001

Mean Diff. Significance (2-tailed)

Figure 8.14 Mean index of expectations (likelihood) of desirable outcomes is presented for patients, parents and their (HSC) surgeons, along with 95% confidence intervals. The mean differences for the paired comparisons are provided along with the 2-tailed significance level.

Parents were compared with their child’s surgeons. Parents believed there was a

significantly larger likelihood that surgery would benefit their child overall, for more

immediate as well as future benefits as well as in all domains except physical

appearance. Although expectations were greatest for parents and surgeons in the

physical appearance domain, surgeons reported significantly greater expectations in the

physical appearance domain than parents (p = 0.007).

167

When patients’ expectations of surgery were compared with those of All Canadian

surgeons, patients’ had significantly larger expectations of surgery in 3 of the 5 domains:

pain expectations (p = 0.02), functional expectations (p = 0.003) and health expectations

(p = 0.019). Surgeons on the other hand had significantly greater psychosocial

expectations of surgery than patients did (p = 0.029). (See Table 8.11)

When parents’ expectations of surgery were compared with expectations of All Canadian

surgeons, parents had significantly greater overall expectations and expectations of

future benefits of surgery than surgeons. Parents also had significantly larger

expectations than surgeons in the domains of functional expectations (p = 0.003) and

health expectations (p = 0.019). Parents had identical expectations as surgeons with

respect to physical appearance expectations. (See Table 8.11)

168

8.3 Expectations of Undesirable Events of Surgery for Scoliosis

Not all outcomes or consequences of surgery are desirable. There are routine expected

consequences (eg. postoperative pain) or unexpected effects (eg. temporary loss of

independence) of a scoliosis operation, in addition to unintended adverse events or

complications, all of which are undesirable. Aim 6 of the thesis was to describe and

compare patients’, parents’ and surgeons’ expectations of undesirable events

associated with surgery for scoliosis. Patients and parents were asked to provide their

estimation of the likelihood of undesirable events or adverse outcomes that they

believed might be associated with surgery. These were rated on an 8-point ordinal

rating scale of probabilities ranging from “Never: 0%” (0) to “Extremely likely: > 95%” (7).

The events were categorized as short term problems (11 items) as well as long term

adverse outcomes (13 items). The surgeons’ perception of the likelihood of undesirable

effects and outcomes of surgery were similarly measured in the Surgeon Questionnaire.

The surgeons were asked to report their perception of the likelihood of each of the same

listed short and long term problems, using the same rating scale.

Means and standard deviations of the patients’ and parents’ and surgeons’ Expectations

of Undesirable Events of Surgery for Scoliosis were determined using the Index of

Expectations for (a) All, (b) Short Term, and (c) Long Term Undesirable Events following

surgery for (i) Patients, (ii) Parents and (iii) Surgeons, respectively.

Patients were compared with their parents and their treating surgeon. Repeated

measures analysis of variance and paired t- tests were used to compare mean scores of

(i) Patients, (ii) Parents, and their treating (iii) Surgeons. Analysis of variance and

student t-tests were used when the mean scores of Patients’, Parents’ and all Surgeons’

expectations were compared.

169

8.3.1 Patients’ Expectations of Undesirable Events

Patients reported a wide range of prior expectations about the likelihood of various

undesirable events associated with surgery. The undesirable events they believed were

most likely (mean out of 7; std dev) were all early or short term events. These were:

i. Post operative pain (5.67; 1.6): 65% (35/54) of children believed that significant

post operative pain was either “very likely” or “extremely likely”;

ii. (Short term) restriction of activities (5.31; 1.43): 46% (24/54) of children believed

that following surgery they were either “very likely” or “extremely likely” to

experience restricted activities;

iii. (Short term) back stiffness (5.19; 1.42): 39% (21/54) patients believed that

following surgery they were either “very likely” or “extremely likely” to experience

short term back stiffness;

iv. (Short term) Unpleasant operative scar (5.04; 1.81): 46% (25/54) of children

believed that they were either “very likely” or “extremely likely” to have an

unappealing scar following surgery.

The remaining listed short term undesirable events were all believed to be unlikely to

occur. (See Table 8.12)

Among the long term undesirable effects only permanent unpleasant scar was

believed to be a > 25% possibility (4.24; 2.05), with 30% of patients (16/54) reporting

that this was either “very likely” or “extremely likely”. The risk (likelihood) of all other

long term consequences or adverse events was believed to be quite small.

(See Table 8.12)

170

Table 8.12 Patients’ Expectations (likelihood) of Undesirable Events following Surgery

Short-Term Undesirable Events

Mean

(Std. Dev.)

Range(0 – 7)

# of Ratings of ‘6’ or ‘7’ (%)

n = 54 i. Post Operative Pain 5.67 (1.60) 0 – 7 35 (65%)

ii. Restricted Physical Activity 5.31 (1.43) 0 – 7 25 (46%)

iii. Early Back Stiffness 5.19 (1.42) 0 – 7 21 (39%)

iv. Unpleasant Scar 5.04 (1.81) 0 – 7 25 (46%)

v. Loss of Independence 2.91 (2.03) 0 – 7 5 (9%)

vi. Abdominal Pain/Nausea/Vomiting 2.81 (1.79) 0 – 6 5 (9%)

vii. Weakness or Sensory Loss 2.80 (1.45) 0 – 7 1

viii. Early Infection 2.56 (1.37) 0 – 6 1

ix. Blood Transfusion 1.59 (1.30) 0 – 6 1

x. Temporary Paralysis 1.39 (0.88) 0 – 5 0

xi. Death 1.04 (0.80) 0 – 3 0

Long-Term

Undesirable Events

Mean

(Std. Dev.)

Range(0 – 7)

# of Ratings of ‘6’ or ‘7’ (%)

n = 54 i. Permanent Scar 4.24 (2.05) 0 – 7 16 (30%)

ii. Future Back Pain 3.94 (1.61) 0 – 7 8 (15%)

iii. Back Stiffness 3.70 (1.72) 0 – 7 7 (13%)

iv. Poor (Unsatisfactory) Correction 3.39 (1.58) 0 – 7 6 (11%)

v. (Long term) Restricted Activities 3.33 (1.55) 0 – 6 4 (7%)

vi. Hardware Problems 2.87 (1.76) 0 – 7 4 (7%)

vii. Re-operation 2.43 (1.54) 0 – 7 2 (4%)

viii. Failure of Fusion 2.20 (1.32) 0 – 5 0

ix. Permanent Sensory/Motor Loss 2.04 (1.48) 0 – 6 2 (4%)

x. Recurrent Deformity 1.91 (1.23) 0 – 5 0

xi. Late Infection 1.63 (1.10) 0 – 4 0

xii. Risks of Transfusion 1.06 (1.19) 0 – 6 1

xiii. Permanent Paralysis 0.91 (0.71) 0 – 3 0

Mean perceived likelihood (out of 7) with standard deviations, range and number of patients who thought these events were either “very likely” or “extremely likely” to occur. These have been arranged in descending order of likelihood.

171

8.3.2 Parents’ Expectations of Undesirable Events

Parents reported a wide range of prior expectations about the likelihood of various

undesirable events associated with surgery for their child. The undesirable events they

believed were most likely (mean out of 7; std dev) were the same early or short term

events believed to be most likely by their children. These were:

i. Post operative pain (6.41; 0.88): 86% (44/51) of parents believed that their

children were either “very likely” or “extremely likely” to experience significant

post operative pain;

ii. (Short term) restriction of activities (5.80; 1.17): 67% (34/51) parents believed

that following surgery their child was either “very likely” or “extremely likely” to

experience restricted activities in the short term;

iii. (Short term) back stiffness (5.65; 1.02): 57% (29/51) patients believed that

following surgery their child was either “very likely” or “extremely likely” to

experience short term back stiffness;

iv. (Short term) Unpleasant operative scar (5.20; 1.56): 47% (24/51) of parents

believed that their child was either “very likely” or “extremely likely” to have an

unappealing scar following surgery.

v. (Short term) Loss of privacy& independence (4.54; 1.69): 29% (15/51) parents

thought that their child was either “very likely” or “extremely likely” to experience

significant loss of privacy and independence for a short period of time following

surgery.

The remaining listed short term undesirable events were all believed to be unlikely to

occur. (See Table 8.13)

Parents believed that the risk (likelihood) of all long term consequences or adverse

events quite small (< 25%). (See Table 8.13)

172

Table 8.13 Parents’ Expectations (likelihood) of Undesirable Events following Surgery

Short-Term Undesirable Events

Mean

(Std. Dev.)

Range(0 – 7)

# of Ratings of ‘6’ or ‘7’ (%)

n = 51 i. Post Operative Pain 6.41 (0.88) 4 – 7 44 (86%)

ii. Restricted Physical Activity 5.80 (1.17) 3 – 7 34 (67%)

iii. Early Back Stiffness 5.65 (1.02) 4 – 7 29 (57%)

iv. Unpleasant Scar 5.20 (1.56) 2 – 7 24 (47%)

v. Loss of Independence 4.54 (1.69) 0 – 7 15 (29%)

vi. Abdominal Pain/Nausea/Vomiting 3.73 (1.83) 0 – 7 10 (20%)

vii. Early Infection 2.63 (1.08) 1 – 6 1

viii. Weakness or Sensory Loss 2.63 (1.28) 0 – 6 1

ix. Blood Transfusion 1.47 (0.92) 0 – 4 0

x. Temporary Paralysis 1.27 (0.72) 0 – 4 0

xi. Death 1.10 (0.54) 0 – 3 0

Long-Term

Undesirable Events

Mean

(Std. Dev.)

Range(0 – 7)

# of Ratings of ‘6’ or ‘7’ (%)

n = 51 i. Permanent Scar 3.80 (1.73) 1 – 7 10 (20%)

ii. Future Back Pain 3.67 (1.44) 1 – 7 6 (12%)

iii. Back Stiffness 3.57 (1.51) 1 – 7 4 (8%)

iv. (Long term) Restricted Activities 3.08 (1.29) 1 – 6 2 (4%)

v. Hardware Problems 3.02 (1.54) 1 – 7 5 (10%)

vi. Poor (Unsatisfactory) Correction 2.96 (0.98) 1 – 5 0

vii. Recurrent Deformity 2.35 (1.49) 0 – 7 3 (6%)

viii. Failure of Fusion 2.31 (1.14) 0 – 6 2 (4%)

ix. Re-operation 2.18 (1.20) 0 – 7 1

x. Permanent Sensory/Motor Loss 1.71 (1.17) 0 – 4 0

xi. Late Infection 1.49 (0.81) 0 – 4 0

xii. Permanent Paralysis 1.08 (0.72) 0 – 4 0

xiii. Risks of Transfusion 1.02 (0.79) 0 – 3 0

Mean perceived likelihood (out of 7) with standard deviations, range and number of parents who thought these events were either “very likely” or “extremely likely” to occur. These have been arranged in descending order of likelihood.

173

8.3.3 Surgeons’ Expectations Undesirable Events

Surgeons reported a wide range of prior expectations about the likelihood of some of the

undesirable events associated with surgery for scoliosis. The undesirable events they

believed were most likely (mean out of 7; std dev) were:

i. Post operative pain (5.63; 1.50): Based on their experience, 46% (11/24) of all

surgeons surveyed, reported that their patients were either “very likely” or

“extremely likely” to experience significant post operative pain;

ii. (Short term) restriction of activities (5.08; 1.67): 29% (7/24) of surgeons reported

that following surgery their patients were either “very likely” or “extremely likely”

to experience restricted activities in the short term;

iii. (Short term) back stiffness (4.50; 1.25): 57% (29/51) of surgeons reported that

following surgery their patients either “very likely” or “extremely likely” to

experience short term back stiffness.

The remaining listed short term undesirable events were all believed to be unlikely to

occur. (See Table 8.14)

Among the long term undesirable effects or adverse events associated with surgery,

surgeons reported that future back pain (4.17; 1.37) and back stiffness (4.17; 1.43) were

somewhat (25% -50%) likely consequences of surgery for scoliosis. (See Table 8.14)

Surgeons from the Hospital for Sick Children were identical to the other Canadian

scoliosis surgeons in their reports of the most likely undesirable events associated with

surgery. Unlike their counterparts, however, they had greater agreement (less

variability) among themselves with all 4 surgeons (100%) reporting that significant post

operative pain and (short term) restriction of activities were “extremely likely”. HSC

surgeons also reported a higher probability (50% - 75%) of long term back stiffness

174

(5.25; 2.06) and future back pain (5.00; 1.41) for their patients, than other Canadian

surgeons.

Table 8.14 All Surgeons’ Expectations (likelihood) of Undesirable Events of Surgery

Short-Term Undesirable Events

Mean

(Std. Dev.)

Range(0 – 7)

# of Ratings of ‘6’ or ‘7’ (%)

n = 24 i. Post Operative Pain 5.63 (1.50) 3 – 7 11 (46%)

ii. Restricted Physical Activity 5.08 (1.67) 2 – 7 7 (29%)

iii. Early Stiffness 4.50 (1.25) 3 – 7 2 (8%)

iv. Unpleasant Scar 3.96 (1.46) 1 – 7 4 (17%)

v. Abdominal Pain/Nausea/Vomiting 3.21 (1.56) 1 – 6 2 (8%)

vi. Loss of Independence 2.91 (1.56) 1 – 6 1

vii. Weakness or Sensory Loss 2.29 (1.81) 1 – 7 2 (8%)

viii. Early Infection 1.88 (0.85) 1 – 4 0

ix. Blood Transfusion 1.67 (0.82) 1 – 3 0

x. Temporary Paralysis 1.33 (0.82) 1 – 4 0

xi. Death 1.00 (0.51) 0 – 3 0

Long-Term

Undesirable Events

Mean

(Std. Dev.)

Range(0 – 7)

# of Ratings of ‘6’ or ‘7’ (%)

n = 24 i. Future Back Pain 4.17 (1.43) 2 – 7 3 (12%)

ii. Back Stiffness 4.17 (1.37) 2 – 7 2 (8%)

iii. (Long term) Restricted Activities 3.25 (1.59) 1 – 7 0

iv. Permanent Scar 3.17 (1.27) 1 – 6 1

v. Poor (Unsatisfactory) Correction 3.04 (0.75) 2 – 5 0

vi. Recurrent Deformity 2.25 (0.74) 1 – 4 0

vii. Re-operation 2.08 (0.78) 1 – 4 0

viii. Failure of Fusion 1.92 (0.93) 1 – 5 0

ix. Hardware Problems 1.83 (0.92) 1 – 5 0

x. Late Infection 1.58 (0.83) 1 – 4 0

xi. Risks of Transfusion 1.29 (0.62) 1 – 3 0

xii. Permanent Sensory Loss 1.25 (0.61) 1 – 3 0

xiii. Permanent Paralysis 1.13 (0.45) 1 – 3 0

Mean perceived likelihood (out of 7) with standard deviations, range and number of surgeons who thought these events were either “very likely” or “extremely likely” to occur. These have been arranged in descending order of likelihood.

175

8.3.4 Comparison of Patients’, Parent’s and Surgeons’ Expectations of

Undesirable Events of Surgery

Patients’ expectations were compared with their parents expectations (paired t-tests),

and patients’ and parents’ expectations were compared with surgeons’ expectations

(ANOVA and t-tests). (See Table 8.15)

Table 8.15 Patients’, Parents’ & Surgeons’ Expectations of Undesirable Events of Surgery

Index of Expectations

Patients’

Expectations (n=54)

Parents’

Expectations(n = 51)

All Surgeons’ Expectations

n = 24

HSC Surgeons’ Expectations

n = 4 All

Undesirable Events

41.63 (12.01)

19.64 - 75.00

43.15 (7.70)

30.36 - 63.10

38.37 (8.36)

25.00 - 53.57 41.96 (4.67)

35.71 - 45.83

Short Term Index

47.14 (12.37)

20.78 - 83.12

52.38 (7.75)

35.06 - 66.23

43.29 (10.14)

24.68 - 62.34 48.70 (3.09)

44.16 - 50.65

Long Term Index

36.98 (13.78)

7.69 - 71.43

35.34 (10.63)

16.48 - 65.93

34.20 (8.84)

19.78 - 53.85 36.26 (6.59)

28.57 - 41.76

Short Term Minor

64.11 (16.85)

33.33 - 97.62

74.37 (12.67)

45.24 - 97.62

59.92 (14.18)

30.95 - 88.10 73.21 (7.87)

61.90 - 78.57

Long Term Minor

48.34 (17.04)

14.29 - 89.80

45.58 (14.08)

24.49 - 79.59

43.96 (11.72)

22.45 - 63.27 48.47 (10.46)

36.73 - 59.18

All Minor

55.62 (14.93)

30.77 - 86.81

58.87 (10.57)

41.76 - 80.22

51.33 (10.94)

30.77 - 68.13 59.89 (8.49)

48.35 - 68.13

Short Term Major

26.77 (10.80)

2.86 - 74.29

25.99 (7.65)

8.57 - 48.57

23.33 (9.81)

14.29 - 45.71 19.85 (2.82)

17.65 - 23.53

Long Term Major

23.72 (12.21)

0.00 - 64.29

23.39 (8.92)

2.38 - 50.00

22.82 (7.29)

14.29 - 42.86 22.02 (3.00)

19.05 - 26.19

All Major

25.11 (10.69)

1.30 - 68.83

24.57 (7.03)

10.39 - 42.86

23.05 (7.76)

15.58 - 44.16 20.78 (1.84)

19.48 - 23.38

Hypothesis 14: Patients’ (pre-treatment) expectations of undesirable events of surgery

for scoliosis are different from Parents’ expectations of undesirable events of surgery.

176

Parents believed that there was a greater likelihood of short term undesirable events

than their children (p = 0.001), but this was only for short term minor undesirable effects

(p <0.0005) (See Tables 8.12 & 8.13). Parents and their children had very similar

perceptions of the likelihood of all long term (minor and major), all major (short and long

term) undesirable effects. (See Table 8.15 & Figure 8.15)

Patients', Parents' & Surgeons' Expectations of Undesirable Events

0.0

10.0

20.0

30.0

40.0

50.0

60.0

70.0

80.0

90.0

100.0

All

Shor

tTe

rm In

dex

All

Long

Term

Inde

x

All

Und

esira

ble

Out

com

es

Shor

t Ter

mM

inor

Long

Ter

mM

inor

Shor

t Ter

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ajor

Long

Ter

mM

ajor

Mea

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Scor

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PATIENTS PARENTS HSC SURGEONS

Patient

vs Parent

- 5.55

0.001

1.46

0.51

- 1.75

0.29

- 10.64

<0.0005

2.52

0.38

0.56

0.77

0.23

0.89

Mean Paired Diff.

Sig. (2-tailed)

Patient vs

Surgeon

- 1.56

0.80

0.72

0.92

- 0.33

0.96

- 9.10

0.29

- 0.13

0.99

6.92

0.21

1.70

0.784

Mean Diff. Sig.

(2-tailed) Parent

vs Surgeon

3.68

0.353

- 0.92

0.865

1.19

0.76

1.26

0.86

- 2.89

0.69

6.14

0.12

1.37

0.763

Mean Dif. Sig.

(2-tailed) Figure 8.15 Patients’, parents’ and surgeons’ mean index of expectations of undesirable events along with 95% confidence intervals. The mean differences of the paired comparisons are provided along with the 2-tailed significance level.

177

Hypothesis 15: Patients’ and Parents’ (pre-treatment) undesirable expectations of

surgery for scoliosis are different from Surgeons’ undesirable expectations of surgery.

Neither patients nor their parents were significantly different from their surgeons in their

perception of the likelihood of different undesirable events. HSC surgeons reported a

greater likelihood of short term minor effects than their patients, but this difference did

not reach statistical significance (p = 0.29).

8.4 Summary

In this chapter, we explored the prior expectations of patients and parents both about

their perception of the natural history of idiopathic scoliosis and the outcomes (both

desirable and undesirable) of surgery for scoliosis. Expectations were defined as the

subjective estimation of the likelihood that a given event or outcome would occur. In

addition, prior expectations about the outcomes of surgery were also estimated as the

minimal acceptable change following surgery that patients (and parents) would need to

be satisfied. Patients’ expectations were compared with their parents. Furthermore,

parents also reported their perception of their child’s responses, to determine how well

parents were aware of their children’s expectations. Surgeons’ expectations (likelihood)

of the natural history of scoliosis and of the desirable and undesirable outcomes of

scoliosis surgery were measured and compared with patients’ and parents’ expectations.

Patients and parents had a wide range of beliefs about the likelihood of occurrence all

the listed items. Although, patients and parents shared similar beliefs (rank order of

likelihood) about the natural history of scoliosis, parents consistently believed that there

was a significantly higher probability for most items. Parents seemed to know that their

children perceived these risks to be lower than them and could accurately predict their

children’s responses. Except in their estimation of the likelihood of deterioration of

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physical appearance and future emotional problems, surgeons reported significantly

lower estimates of the risk of all other issues than their patients. In particular, patients

and parents believe there is a much higher likelihood of future back pain, future

restriction of physical activities, sports and recreation, future general health risks

associated with untreated scoliosis, than their respective surgeons believe. Of interest,

there was wide variation in surgeons’ estimates of the likelihood of various future

problems, suggesting that there is poor agreement among surgeons about the natural

history of scoliosis for individual patients. The mismatch between patients’ (and

parents’) and surgeons' overall perceptions of the natural history may be due to

surgeons’ own uncertainty about the natural history and/or that surgeons’

communication of their understanding of the natural history of scoliosis to their

patients/parents is not effective.

Patients and parents shared similar beliefs about which items were most likely to be

benefited by surgery. However, parents in general had significantly higher expectations

than their children, reporting a higher likelihood (probability) that surgery would

accomplish most of these goals/items. Similarly, patients and parents shared similar

priorities in their expectations of desirable outcomes based on the minimal change they

would find acceptable to be satisfied with surgery. However, once again parents’ levels

of minimal acceptable change were significantly greater than their children’s levels.

Except in the domain of physical appearance expectations, and the psychosocial

domains, patients and parents had far higher expectations of surgery than their

surgeons. Patients and parent have much higher expectations of surgery in the

domains of functional, pain and health benefits than their surgeons. Surgeons were in

close agreement only about the likelihood of benefit in the domain of physical

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appearance. For all other domains, Canadian scoliosis surgeons, including the HSC

surgeons reported a wide range in their perception of the likelihood of various outcomes.

In general, patients, their parents and their surgeons have similar perceptions about the

likelihood of undesirable effects of surgery. They all believed that short term minor

effects were most likely, while short term major adverse events and most long term

undesirable effects (minor and major) are not very likely consequences of surgery.

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Chapter 9

DISCUSSION

9.1 Patient, Parental & Surgeon Priorities in Idiopathic Scoliosis: Conclusions

Concerns about Scoliosis

In Chapter 6, we reported that patients and parents expressed a wide range of prior

concerns about many of the perceived present and future consequences of scoliosis.

The issues that patients (on average) were most concerned about, were shared by most

patients. Similarly the most significant concerns expressed by parents were also shared

by most parents. However, at least some proportion (up to 25%) of patients (and

parents) expressed a high level of concern for issues that other patients and parents did

not. When compared with their own children, parents expressed a larger number of

major concerns than patients, and the magnitude of their concerns about different effects

of scoliosis were consistently higher than their children in every domain. Patients and

their parents had the greatest concerns about the effects of scoliosis on physical

appearance and the risk of future back pain. Patients (and parents) also expressed a

high level of concern about risk of restriction of future activities. Parents expressed a

high level of concern about the effects of scoliosis on their child’s emotional well-being

and self esteem, general health and future lung/heart problems. These issues did

not seem to concern patients much. When asked to report what they thought their

children’s responses might be, parents seemed to recognize that their children’s

responses would be different from theirs, but they were also remarkably perceptive of

the direction as well as the magnitude of these differences.

Surgeons reported consistently fewer and far less serious concerns about the effects of

scoliosis than either patients or their parents in all domains. This is not surprising

despite the fact that each surgeon was asked to assume the role of a parent of a child

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with scoliosis needing an operation, when responding to the questions about concerns

about scoliosis. This simulation is unlikely to capture the real magnitude of concerns a

surgeon might feel if his or her daughter truly faced the situation. Nevertheless, we felt

that this would certainly capture the items and domains of most significant concern to

surgeons who had the benefit of their knowledge and experience about the natural

history of scoliosis. Surprisingly, surgeons seemed to differ from each other in the level

of concern for many of the issues. The most significant concerns expressed by

surgeons (as parents) related to effects of scoliosis on physical appearance, which

reassuringly were the top concerns of patients and their parents. Surgeons’ next highest

concerns related to potential psychosocial effects of scoliosis. Surgeons did not have

much concern about the risk of future back pain or restriction of functional activities,

which were major concerns of both patients and parents.

Concerns of patients (or parents) about scoliosis and their perception of the present and

future consequences of the condition (in contrast to the treatment) have hitherto not

been reported. In their survey of patients with idiopathic scoliosis (and their parents)

Bridwell et al set out to assess their concerns about surgery, their reasons for having

surgery and their expectations of treatment (Bridwell, Shufflebarger et al. 2000). In this

survey, one question asked “if your child/the patient had to spend the rest of his/her life

with his/her bone and muscle condition as it is right now, how would you feel about it?”

The responses were rated on a 5 point ordinal scale from “very satisfied” (1) to “very

dissatisfied” (5). On the basis of the mean patient score (4.05) and the parent score

(4.36), the authors concluded that “the data suggest both patients and parents were

concerned about the present disease, but that parents were more concerned than the

patient”. While this question suggests that patients and parents are “dissatisfied” with

the current status, neither this question nor the survey overall actually tells us anything

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about “concerns” about scoliosis, or what specific concerns patients and parents might

have about the condition.

Natural History of Scoliosis

In the conceptual framework that was developed for this study, concerns about potential

consequences of a condition (idiopathic scoliosis) are related to the expectations about

the natural history of the untreated condition, expressed as the subjective perception

(belief) of the likelihood (probability) of future consequences. Expectations about the

natural history of scoliosis were reported in Chapter 8.

We found that patients and parents had a wide range of beliefs about the likelihood of

occurrence all the listed items. Although, patients and parents shared similar beliefs

(rank order of likelihood) about the natural history of scoliosis, parents consistently

believed that there was a significantly higher probability for most items if their child’s

scoliosis was not treated. This might explain parents’ greater levels of concern than

their children. Just as was found with concerns about scoliosis, parents seemed to

recognize that their children perceived these risks to be lower than them. They were

also able to accurately predict their children’s responses.

Except in their estimation of the likelihood of deterioration of physical appearance and

future emotional problems, surgeons reported significantly lower estimates of the risk

of all other issues than their patients. In particular, patients and parents believe there is

a much higher likelihood of future back pain, future restriction of physical activities,

sports and recreation, future general health risks associated with untreated scoliosis,

than their respective surgeons believe. Once again, there was wide variation in

surgeons’ estimates of the likelihood of various future problems, which might explain the

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similar variation found about the level of concern surgeons had for these issues. This

suggests that there is a relatively modest agreement among Canadian scoliosis

surgeons about the natural history of scoliosis for individual patients. The mismatch

between patients’ (and parents’) and surgeons' overall perceptions of the natural history

may be due to surgeons’ own uncertainty about the natural history and/or that surgeons’

communication of their understanding of the natural history of scoliosis to their

patients/parents is not effective in influencing patients’ or parents’ perceptions, except in

the domain of physical appearance. Consequently, in the domain where surgeons are

universally in agreement, patients’ and parents’ expectations of the natural history are

well aligned with their surgeons’.

This is the first study that has systematically explored the (perceptions about) the natural

history of scoliosis both from the perspective of patients and their parents, but also from

those of their surgeons, whose perspective presumably plays a significant, if not the

most important influence on patients’ and parents’ perceptions.

Desires (wishes) and Goals of Surgery

In Chapter 7, we reported what patients and parents want from the surgery for scoliosis

and how they ranked these desires or wishes in the order of importance, and compared

these with their surgeons’ goals or reasons for scoliosis surgery.

Although patients report a wide range in the strength of desires for each of the goals of

surgery, their strongest desire of surgery and the most important reason for undergoing

surgery was to prevent deterioration of, and/or improve current physical

appearance. Their parents were identical in this regard. The five most important

reasons for surgery reported by parents were the same as the five most important

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reasons for surgery reported by patients. Although, parents had very similar desires or

wishes as their children, the strength of their desires was greater than their children

across all domains and items/goals. However, parents seemed to recognize this

difference and were able to predict their children’s most important desires as well as the

strength of these desires. This was consistent with the finding of parents’ greater

concerns about scoliosis than their children and their knowledge of this difference.

Canadian scoliosis surgeons also identified physical appearance as the most frequent

reason and most important reason for recommending surgery for idiopathic scoliosis.

Prevention of future back pain was one of the top five reasons for surgery for patients,

parents and Canadian scoliosis surgeons but not at all for surgeons from the Hospital for

Sick Children. Surgeons from the Hospital for Sick Children reported similar importance

rankings as other Canadian surgeons, but unlike their counterparts, did not rank

prevention of future back pain as an important goal for surgery. Instead they

prioritized prevention of future and/or improvement of current emotional problems

among their top five most important goals for surgery, which were not in patients’ or

parents’ top list of priorities. While Canadian scoliosis surgeons are in strong agreement

about the most important reason for scoliosis surgery, they do not agree among

themselves about other reasons, which may reflect their differences of opinion about

their perceptions of the natural history of idiopathic scoliosis. Patients and parents

express some desires or reasons for surgery which their surgeons do not believe are

goals of surgery.

Our findings are in direct contrast with those reported by Bunch and Chapman, who

explored patient preferences in decision making for surgical treatment of idiopathic

scoliosis (Bunch and Chapman 1985). They used a multiple-attribute utility model to

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assess patient preferences for two (now obsolete) surgical techniques, by measuring

utilities for specifically selected attributes: the nature of after care; the risk of reoperation;

risk of nerve damage; and the percentage of curve correction; in a group of patients, one

or both of their parents, a group or orthotists and orthopaedic surgeons. In considering

which type of surgery to have, avoiding major post-operative complications such as

nerve damage and reoperation were deemed to be more important than the percentage

of curve correction achievable or the need for post-operative immobilization. The four

groups were similar in the rating of the relative importance of the four attributes. The

authors concluded that the values of surgeons, patients and family members are virtually

identical and that surgeons could serve as a good proxy for the “informed” patient.

At best, this study tells us what patients don’t want from surgery (major complications),

and little about what they do want or their reasons for surgery in the first place. The

analysis was framed in the constrained context of the four selected attributes, which

were chosen by the surgeons, not by patients. The assumption that patients would

value these chosen attributes as the most important ones to consider in making their

decision imposes the surgeons’ perspective on decision making and ignores the factors

that patients might wish to consider. For instance, we know that patients do not evaluate

their outcomes based on radiographic criteria, much less the percentage of curve

correction (Haher, Merola et al. 1995)(D'Andrea, Betz et al. 2000)(Theologis, Jefferson

et al. 1993). Assumptions about the “informed patient” or inferences about the ability of

surgeons to serve as a good “proxy” cannot be made in this study. On the contrary, our

results strongly refute such a conclusion.

In a more contemporary study that explores these issues, Bridwell et al explicitly set out

to assess patients and parents reasons for having surgery as one of the objectives

(Bridwell, Shufflebarger et al. 2000). This was a cross-sectional pre-operative survey of

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91 patients with idiopathic scoliosis (and their parents) recruited from four different

centres in the United States. The participants completed a self-administered

questionnaire. Respondents were asked to rank a list of 14 items in the order of most to

least important reason for having surgery. The 14 items were distributed over five

categories: cosmetic correction (6); reducing present pain (1); future consequences (3);

return to function (3); number of levels fuses (1). The top two ranked categories for both

parents and their children were future consequences (progression of deformity;

cardiopulmonary function; and future pain), and cosmetic correction. Individual

patients tended to have different reasons for surgery than their parents, but these

differences were very small (Bridwell, Shufflebarger et al. 2000).

This was the first published study that explored patients’ and parents’ desires (reasons

for) of surgery for idiopathic scoliosis (Bridwell, Shufflebarger et al. 2000). A large

number of participants were surveyed in four different centres. This study also had the

advantage of being conducted in a cohort of patients prior to their upcoming surgery for

scoliosis. However, this study had some limitations. It was not based on any theoretical

framework. No conceptual or operational definitions were provided. The development

or validation of the questionnaire was not described. The source of items in the

instrument was not clear, and it was not apparent whether patient or parental input was

considered at all to ensure that issues relevant to them were included in the

questionnaire. For instance there were no items pertaining to the psychosocial domain

(emotions, self-esteem, social interactions/friendships/relationships etc.) The wording of

many items used technical jargon (eg. “trunk shift”, “anterior chest asymmetry”, “cardio-

pulmonary dysfunction”, “rib hump”, “lumbar hump”, etc.), suggesting that the items were

derived from surgeons. Such language might result in items being misinterpreted or not

understood at all. In fact, the authors reported that some incomplete or unexpected

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responses suggested that respondents “did not seem to have a full understanding of the

questions asked”. If that was indeed the case it should not be assumed that completed

responses reflect “a full understanding of the questions asked”, since the questionnaire

was self-administered. Notwithstanding these limitations, this was an excellent study

and the most important reasons for surgery identified by patients and parents pre-

operatively were similar to those identified in our study, where participants were asked to

report their prior desires (reasons for surgery) after their operation had been completed.

Expectations of Surgery

In Chapter 8, we reported the prior expectations of patients and parents about the

outcomes (both desirable and undesirable) of surgery for scoliosis. Expectations were

defined as the subjective estimation of the likelihood that a given outcome would occur.

Expectations about the outcomes of surgery were also estimated as the minimal

acceptable change following surgery that patients (and parents) would need to be

satisfied.

Patients and parents shared similar beliefs about which items were most likely to be

benefited by surgery. Consistent with their expectations based on perceived likelihood,

patients and parents shared the same set of expectations of desirable outcomes based

on the minimal change they would find acceptable to be satisfied with surgery.

However, parents had significantly higher expectations than their children, reporting a

higher likelihood (probability) that surgery would accomplish most of these goals/items

and significantly greater levels of minimal acceptable change than their children. Except

in the domains of physical appearance expectations and the psychosocial

expectations, patients and parents had far greater expectations of surgery than their

surgeons. Patients and parent have much higher expectations of surgery in the

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domains of functional, pain and health benefits than their surgeons. Surgeons were

in close agreement only about the likelihood of benefit in the domain of physical

appearance. For all other domains, Canadian scoliosis surgeons, including the HSC

surgeons reported a wide range in their perception of the likelihood of various outcomes.

In the study by Bridwell et al, expectations of surgery were measured with the question:

“...... As a result of your child’s/the patient’s treatment, you expect your child/the patient

(to have … or be able to..)” for 9 items: pain relief; look better; feel better about

him/herself; sleep more comfortably; do more activities at home; do more at school;

more play or recreational activities; more sports; be free from pain or disability as an

adult. Items were rated on a 5 point scale from “Definitely Yes” to Definitely Not”

(Bridwell, Shufflebarger et al. 2000). They found that for both patients and parents,

freedom from pain and disability as an adult was the highest “expectation” followed

by to look better. They also found that “parents were significantly more demanding

than patients about having more substantial pain relief, looking better, feeling better

about self, and sleeping more comfortably”. They concluded that “this reflects a greater

concern about the pathologic process or the disease among parents than patients.”

Although the differences were statistically significant, the absolute differences were very

small and possibly meaningless. In fact there was not much difference in the mean

ranks of all items. This is not surprising, because respondents might be reluctant to rate

any items as “definitely not”. Furthermore, any conclusions about parents’ or patients’

concerns about the pathologic process or the disease are speculative because this was

not addressed in the questionnaire. The question was framed to ask “what expectations

do you have for your child’s/the patient’s treatment? ...” No definition of expectation was

provided, and the interpretation of “expect” in the question could be variously interpreted:

as what one wants; what’s most likely to occur (expectancy); or what’s minimal

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acceptable result or a demand (value). Based on the authors’ statements

(“..demanding..”) above, they used the term “expectations” to represent a value rather

than an expectancy (probability).

In our study, expectations about desirable outcomes of surgery were operationalized in

two ways (expectancy and a value) and the questions constructed explicitly to reflect the

different approaches, and all items and domains derived from the initial open ended

interviews of patient and parent that were used to develop the questionnaire.

Concerns and Expectations about Undesirable Effects of Surgery

In Chapter 6, concerns about undesirable effects of surgery were described. This is in

contrast to their expectations (perceived likelihood) about the undesirable effects of

surgery, which were reported in Chapter 8. One can have a high (or low) level of

concern for a particular event because of, or despite, one’s perception of the likelihood

of that event.

Patients and parents report a wide range (from “not at all concerned” to extremely

concerned”) in their level of concern for nearly all short and long term undesirable effects

or adverse events associated with surgery. Patients’ biggest short term concerns were

about pain after surgery, unpleasant scar, restricted physical activities and back

stiffness. In general, patients were less concerned about long term effects than about

short term possibilities. The biggest concerns for the long term were about unpleasant

scar, rods or hooks causing problems and permanent back stiffness.

In general, parents reported a larger number of serious concerns as well as greater level

of concerns for most undesirable effects of surgery than their children. This included the

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same short term effects that concerned children most but also significant worries about

the risk of temporary paralysis and death. Parents’ concerns about long term

undesirable effects of surgery were also greater than those of their children but these

differences were smaller. Parents, once again, were aware that they had greater

concerns about surgery than their children did, and were able to predict quite accurately

what level of concerns their children would report.

In general, patients, their parents and their surgeons had similar perceptions about the

likelihood of undesirable effects of surgery. They all believed that short term minor

effects were most likely, while short term major adverse events and most long term

undesirable effects (minor and major) are not very likely consequences of surgery. In

this context patients’, parents’ and their surgeons’ expectations were well aligned.

In the study by Bridwell et al, one of the objectives was to assess patients’ and parents’

concerns about surgery (Bridwell, Shufflebarger et al. 2000). This issue was addressed

by a single question which was worded: “Please rate your biggest concern about your

child’s/patient’s surgery, with 1 being the most important and 6 being the least important”

This was followed by a list of 6 items to be ranked from most to least important:

“neurologic deficit”; “wound infection”; “pseudoarthrosis”; “immediate post-operative

pain”; “adjustments needed in the patient and family life for the first year after surgery”;

“the location and the appearance of the surgical scar”. Neurologic deficit and

pseudoarthrosis ranked the most important concern by patients and parents. These

two issues may be the most “important” concern but may not be the most common or

biggest concern. In our study we explored patients’ and parents’ concerns about

surgery by asking them to report both the level of concern for each undesirable effect as

well as their perception of the likelihood of each of these effects. The level of concern

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for each undesirable effect did not seem to be related to the perceived likelihood of the

event.

9.2 Limitations

The most significant limitation of this work is the cross-sectional design of the study.

Patients (and parents) were interviewed two years after they had undergone surgery for

scoliosis and were asked to report the concerns, desires and expectations they had

experienced prior to surgery. This raises two important issues.

First is the issue of recall. Participants were enrolled in a randomized trial comparing

two different instrumentation systems for surgical correction of their scoliosis, the final

outcome of which was being assessed 2 years post surgery. Both as part of routine

clinical care and because of their participation in the trial, these patients received regular

follow-up. They had all lived with their scoliosis for some time prior to the decision to

proceed with surgery, so would likely have had sufficient time to develop a set of

priorities (concerns desires and expectations) during the time leading up to their

operation. The decision to proceed to surgery is a significant event and the time leading

up to the actual operation, reinforced by the process of informed consent and the various

questionnaires administered at baseline as part of the trial, might have reinforced some

of their thoughts in these matters, making them more easy to recall at the time of the

interview. During the interviews, which were all conducted by the principal investigator,

neither patients nor their parents at any time indicated that they had difficulty recalling

their experiences two years prior.

The second issue is one of hindsight bias. Our study captures patients’ (and parents’)

perception of their prior priorities at one point in time. Priorities can change over time

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and also be influenced by the outcome. It has been suggested that the strong

relationship between expectations and satisfaction may be an artifact of methodology,

because asking patients after their experiences might lead to a post-hoc rationalization

of their prior beliefs (Linder-Pelz 1982). Expectations change in the light of accumulated

experience, and satisfaction will be reported in respect of these continually changing

experiential states (Locker and Dunt 1978). Hindsight expectations are consistently

biased in the direction of perceived occurrence or outcome (Christensen-Szalanski and

Willham 1991). On the other hand, although pre-treatment expectations are

independent of, and uncontaminated by, subsequent events, they may in fact be less

relevant than expectations that are formed (or persist) during or after the intervention

(hindsight expectations) (Kravitz 1996). If prior expectations (and their fulfillment)

contribute to the formulation of satisfaction, then the recollection of prior expectations at

the time that satisfaction is being measured is all that matters. It has been shown that

hindsight, rather than foresight expectations (i.e., expectations formed prior to surgery)

are the more potent determinant of satisfaction, since at the time of assessing

satisfaction, the unbiased foresight expectations are no longer available to the patient

(Zwick, Pieters et al. 1995). Longitudinal studies are necessary to establish how patient

priorities emerge and are modified during the process of care (Thompson and Sunol

1995). Clearly, in our study we have no way of determining what patient and parental

priorities would have been had they been interviewed pre-operatively, or for that matter,

what they would be if interviewed again in the future. It is reassuring that the study by

Bridwell et al, in which patients’ reasons for surgery and their expectations of surgery

were measured preoperatively, the issues of highest priority were similar to those

identified in hindsight by our study (Bridwell, Shufflebarger et al. 2000).

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The reliability and validity of the questionnaires used for the structured interview was not

formally established. However, the questionnaire was developed using a theoretical

framework, and the questions framed on the basis of explicit definitions for the various

priorities of interest. Face and content validity can be inferred because the

questionnaire was developed directly from patient and parental input from open ended

interviews followed by iterative process of testing multiple preliminary versions of the

questionnaire and pilot testing of the final questionnaire prior to implementation. The

surgeon version was developed concurrently. Reliability (test-retest) of responses was

not conducted. This problem was minimized by the nature of the in depth interview. The

face to face interviews were conducted in the participants’ homes by the same

interviewer (principal investigator). This allowed the interviewer to ensure that the intent

of each question was being interpreted uniformly by all participants. The close

correlation between parents’ perceptions of their children’s responses with patients’

actual responses, despite the fact that patients and parents were interviewed separately

and blinded to the others’ responses, provides another measure of reliability.

9.3 Summary of Findings & Significance of the Research

There is very little known about the priorities of children (and their parents) with chronic

disease in general. We chose to study this in adolescents with idiopathic scoliosis

because we felt it would be an appropriate and convenient model to explore these

issues. The patients are old enough to articulate their priorities, and yet not old enough

to make decisions about treatment independently of their parents. Prior to this work, we

knew little about how adolescents with scoliosis viewed their condition, what they

believed were its consequences, what their concerns were about the diagnosis and its

treatment and how these concerns might influence what they wanted and expected from

treatment. The natural history of untreated scoliosis and long term outcomes of

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treatment were uncertain. The goals of treatment of idiopathic scoliosis are often

preventive, and therefore decisions are made in the absence of any experienced (or

even perceived) problem at the time, in order to avoid potential future problems that the

patient (or parents) may never come to experience. Under circumstances of uncertainty,

an understanding and consideration of patients’ priorities and their preferences was all

the more important. Orthopaedic surgeons had a superficial understanding of patients’

and parents’ priorities. Knowledge of patients’ concerns, what they want, what they

expect and how their priorities differ from their parents’ would provide important insight

into hitherto unknown patient preferences, which in turn could influence decision making,

guide the process of informed consent and facilitate the evaluation of outcomes that

matter most to patients. This could improve the quality of care they received and

contribute to increased patient satisfaction. Little attention had been paid to the

preconditions and possible determinants of patient satisfaction, such as patient priorities

and preferences.

The following is a summary of our findings and their implications:

1. Adolescents and their parents expressed a wide range of beliefs about their

perception of the likelihood of future events related to scoliosis if left untreated (natural

history). Although individual adolescents shared similar types of beliefs about the natural

history with their respective parents, parents consistently assigned significantly higher

probabilities for future consequences than their children. Except in their estimation of the

likelihood of deterioration of physical appearance and future emotional problems,

surgeons reported far lower estimates of the risk of all future events than either patients

or parents. But surgeons themselves did not seem to agree about the natural history of

scoliosis, and many of their individual perceptions did not match the published literature

on the natural history. Such variations in surgeons’ perceptions about the natural history

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either implies that there is still much uncertainty or disagreement about the natural

history and/or that surgeons have not paid much attention to the literature on the subject.

This has significant implications. Presumably the surgeon’s perception of the natural

history for an individual patient and the communication of that information have a

significant, if not pre-eminent, influence on the patient’s and parent’s perceptions of the

natural history, and the concerns that ensue. The surgeon’s perception of the natural

history is (or ought to be) the predominant factor that informs the surgeon’s decision to

recommend surgery and (when combined with the patient’s and parent’s desires and

expectations) the decision to proceed with that recommendation. The wide range of

beliefs about the probability of future consequences (natural history) might explain the

similar wide range in the levels of concern about those consequences.

2. Adolescents and their parents expressed a wide range of concerns about the

perceived consequences/natural history of idiopathic scoliosis. Although the most

significant concerns expressed were shared by most adolescents and their parents, up

to 25% of adolescents (and parents) expressed high levels of concern for issues that

other adolescents (and parents) did not. Consequently, one must not assume that all

patients (or all parents) are alike and share similar concerns. Individual priorities are

different. Parents have greater and different sets of concerns than their adolescents, but

remarkably, parents seem to be able to predict their children’s concerns. Parents’ own

concerns are not good proxies for their children’s concerns, but parents might be reliable

sources of information regarding their children’s concerns when explicitly asked about

them.

Surgeons (assuming the role of parents) uniformly reported far fewer and significantly

lower levels of concern about the perceived consequences/natural history of idiopathic

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scoliosis than parents of children with idiopathic scoliosis. With the exception of effect of

scoliosis on physical appearance, surgeons did not share the same types of concerns

with either adolescents or their parents or with themselves. The knowledge that

surgeons underestimate the number and extent of concerns of their patients and

patients’ parents, ought to spur surgeons to expand their discussion with patients and

their parents to address these concerns. This gap between surgeons’ perceptions and

those of their patients and their parents could be narrowed and/or managed by

a. Educating surgeons about the existence of these potential differences

b. Encouraging patients and parents to voice their concerns so that these may

be appropriately validated or alleviated using evidence based information

regarding the natural history and prognosis.

c. Providing appropriate support/counseling to help patients and parents better

cope with their concerns.

3. Patients and parents wanted the same things from surgery for idiopathic

scoliosis. Parents expressed stronger desires for these goals than their children.

Improving (or preventing future deterioration of) physical appearance was the primary

reason for surgery for patients, their parents and surgeons. However, other important

reasons identified by both patients and their parents were quite different from the goals

of surgery articulated by surgeons, and surgeons themselves did not agree with each

other about the most important goals beyond the primary objective relating to physical

appearance. Consequently, adolescents and their parents express important desires or

reasons for surgery, which their surgeons do not believe are the goals of surgery.

Similarly, adolescents and their parents expressed their highest expectations (perceived

likelihood) for the same set of (desirable) outcomes, but parents had consistently higher

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levels of expectations for these outcomes than their children. Except in the domains of

physical appearance and psychosocial expectations, adolescents and their parents

expressed far greater expectations of surgery than their surgeons, especially in the

functional, pain and health benefit domains. Surgeons themselves could not agree in

their individual perceptions of the likelihood of various desirable outcomes.

These findings strongly refute the notion that surgeons can be a good proxy for the

“informed patient” contradicting what has been previously suggested (Bunch and

Chapman 1985). Surgeons should be aware of the potential for this mismatch and

should actively explore with their patients whether there is indeed a gap between

patients’/parents’ desires and expectations, and surgeons’ goals and expectations, and

try to align these goals and expectations lest this mismatch leads to disappointment with

the outcomes of surgery.

4. Patients’ concerns about the undesirable effects of surgery are focused primarily

on short term post-operative experiences. Parents reported a larger number of serious

concerns as well as a greater level of concern for each of these than their children.

Parents were particularly concerned about the risk of paralysis or death, even though

they perceived (rightly) that the likelihood of these complications was quite small.

Interestingly, the perceived likelihood of undesirable effects of surgery (probability of

risk) were similar for adolescents, their parents and their surgeons. This (rare) alignment

of perspectives probably reflects:

a. The quality and consistency of the literature about complication rates.

b. The nature of the informed consent process, which tends to emphasize the

risks and complications rather than the reasons (indications) for surgery, and

desires and expectations of surgery.

198

In conclusion, we found that, although on average, patients and their parents had similar

sets of priorities, there were significant differences in priorities among patients and

among parents as well as differences between patients and their parents. This is

important because it tells us that not all patients (or parents) have the same priorities.

Not only are parents’ priorities distinct from those of their children, patients’ and parents’

priorities are not always concordant with surgeons’ goals and expectations. Surgeons

need to communicate more effectively with their patients about the reasons (or goals) of

treatment and expectations (likely outcomes) of treatment. Such communication might

be facilitated using questionnaires pre-operatively that explicitly explore these priorities.

The questionnaire developed for this research has the potential of being adapted to

serve this purpose. Such a questionnaire will enable surgeons to identify any mismatch

in priorities and allow them to explore these with their patients (and their parents) both to

influence decision making and to ensure that surgeons’ goals and expectations of

surgery are aligned with patients’ or parents’ reasons and expectations. The

questionnaire might provide the opportunity for patients and their parents to voice

hitherto unexpressed desires and expectations, which can be appropriately addressed

as those that are realizable, unrealistic, unlikely or uncertain to occur. Such a discussion

is likely to enhance the informed consent process. Surgeons seem to be more effective

at communicating the likelihood of the risks and complications of surgery (the

undesirable effects) as this is, perhaps unintentionally, the major emphasis of the

process of informed consent.

9.4 Future Research

The questionnaires developed for this study also included sections about patients’ (and

parents’) current (residual) concerns about scoliosis after surgery, current perception of

the likelihood of various issues now that surgery was done, the perceived magnitude of

199

change actually experienced for each of the items, as well as the level of satisfaction

with the change in each item. In addition, patients completed other outcome measures

as part of their assessment in the randomized trial. These data will allow us to test

empirically the relationships hypothesized in the conceptual framework that was

developed for this study. We intend to study the relative and collective contributions to

the formulation of satisfaction with surgery by the alleviation of concerns; the decrease

(or change) in the perception of the likelihood of future risks (perceived alteration of the

natural history of scoliosis by the surgery); the magnitude of change experienced for

each desired item/goal; the gap between this change and the magnitude of change that

was desired and expected; in addition to the functional and quality of life outcome scores

and radiographic measurement of change.

This model has the potential to provide a template to measure concerns, desires and

expectations for other conditions both in children and adults, and a framework to design

disease & treatment specific measures of satisfaction.

200

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Post-Operative Survey of Idiopathic Scoliois

Patients (2 years after surgery)

209

I have read and understood the above statement. My questions have been answered.

I am willing to participate in the interview. I understand that I can withdraw from participation at any time. I realize

that the interview will be kept strictly confidential with access restricted only to the researchers. My identity will not

be revealed in any published or presented results.

In the event of any other questions or concerns I can contact Dr. Unni Narayanan at (416) 813-7654 Extn:3196 or

Sam Donaldson at (416) 813-7654 Extn: 3156.

Name & Signature of Patient: Date

Name & Signature of Mother/guardian:

Name & Signature of Father/guardian:

Name & Signature of Physician/Researcher obtaining consent:

PATIENT CONSENT FORM

210

Before Surgery Not at all Hardly Slightly Somewhat Very Extremely Don’t

Because of my scoliosis, I was Concerned Concerned Concerned Concerned Concerned Concerned Remember

----------------- concerned about my: 0 1 2 3 4 5 DR

1. Physical appearance at the time 0 1 2 3 4 5 DR

2. Physical appearance in the future 0 1 2 3 4 5 DR

3. Back pain at the time 0 1 2 3 4 5 DR

4. Risk of back pain in the future 0 1 2 3 4 5 DR

5. Physical activity at the time 0 1 2 3 4 5 DR

6. Future physical activity 0 1 2 3 4 5 DR

7. Sports/recreation at the time 0 1 2 3 4 5 DR

8. Future participation sports/recreation 0 1 2 3 4 5 DR

9. Having to wear a brace 0 1 2 3 4 5 DR

10. Emotional/psychological well being 0 1 2 3 4 5 DR

11. Future emotional/psychological well being

0 1 2 3 4 5 DR

12. Self-esteem at the time (the way I felt about myself)

0 1 2 3 4 5 DR

13. Self esteem in the future 0 1 2 3 4 5 DR

14. Friendships/relationships at the time 0 1 2 3 4 5 DR

15. Future relationships/marriage 0 1 2 3 4 5 DR

16. Pregnancy/childbirth 0 1 2 3 4 5 DR

17. Sexual function 0 1 2 3 4 5 DR

18. Employment/career 0 1 2 3 4 5 DR

19. Risk of future lung and heart problems 0 1 2 3 4 5 DR

20. Risk of future general health problems 0 1 2 3 4 5 DR

21. Having a shorter life 0 1 2 3 4 5 DR

22. Other issue: 0 1 2 3 4 5 DR

23. Other issue: 0 1 2 3 4 5 DR

Patients with adolescent idiopathic scoliosis report many concerns regarding their condition. Before your surgery, how concerned were you about the following issues? Please circle the number/response that best applies.

1A. Patient’s concerns regarding scoliosis (Previous concerns)

211

After Surgery Not at all Hardly Slightly Somewhat Very Extremely

Because of my scoliosis, I am now Concerned Concerned Concerned Concerned Concerned Concerned

____________ concerned about my: 0 1 2 3 4 5

1. Physical appearance at present 0 1 2 3 4 5

2. Physical appearance in the future 0 1 2 3 4 5

3. Back pain at present 0 1 2 3 4 5

4. Risk of back pain in the future 0 1 2 3 4 5

5. Physical activity at present 0 1 2 3 4 5

6. Future physical activity 0 1 2 3 4 5

7. Sports/recreation at present 0 1 2 3 4 5

8. Future participation sports/recreation 0 1 2 3 4 5

9. Having to wear a brace 0 1 2 3 4 5

10. Emotional/psychological well being now 0 1 2 3 4 5

11. Future emotional/psychological well being 0 1 2 3 4 5

12. Self-esteem at present (the way I feel about myself)

0 1 2 3 4 5

13. Self esteem in the future 0 1 2 3 4 5

14. Friendships/relationships at present 0 1 2 3 4 5

15. Future relationships/marriage 0 1 2 3 4 5

16. Pregnancy/childbirth 0 1 2 3 4 5

17. Sexual function 0 1 2 3 4 5

18. Employment/career 0 1 2 3 4 5

19. Risk of future lung and heart problems 0 1 2 3 4 5

20. Risk of future general health problems 0 1 2 3 4 5

21. Having a shorter life 0 1 2 3 4 5

22. Other issue: 0 1 2 3 4 5

23. Other issue: 0 1 2 3 4 5

Patients with adolescent idiopathic scoliosis report many concerns regarding their condition. Since your surgery, how concerned are you about the following issues now? Please circle the number/response that best applies.

1B. Patient’s concerns regarding scoliosis (Present concerns)

212

Not a Very Very Don’t

Before surgery, Problem Minimal Mild Moderate Severe Severe Remember

my problems due to scoliosis were: 0 1 2 3 4 5 DR

1. Effect on my physical appearance 0 1 2 3 4 5 DR

i. Back looked curved or crooked 0 1 2 3 4 5 DR

ii. Bump in the back or prominent ribs 0 1 2 3 4 5 DR

iii. Shoulders not at same level 0 1 2 3 4 5 DR

iv. Shoulder blades asymmetric 0 1 2 3 4 5 DR

v. Chest or breasts not symmetrical 0 1 2 3 4 5 DR

vi. Waistline is asymmetrical or

“hips” are not balanced

0 1 2 3 4 5 DR

vii. Body leans to one side (trunk imbalance) 0 1 2 3 4 5 DR

viii. Other aspects: 0 1 2 3 4 5 DR

2. Back pain 0 1 2 3 4 5 DR

3. Effect on my physical activities 0 1 2 3 4 5 DR

4. Effect on my sports/recreation 0 1 2 3 4 5 DR

5. Wearing a brace 0 1 2 3 4 5 DR

6. Problems with my emotions 0 1 2 3 4 5 DR

7. Effect on my self esteem (the way I felt about myself)

0 1 2 3 4 5 DR

8. Effect on my relationships/friendships

0 1 2 3 4 5 DR

9. Other problems: 0 1 2 3 4 5 DR

10. Other problems: 0 1 2 3 4 5 DR

Patients experience certain problems or difficulties that they believe are because of their scoliosis. Before surgery, how much of a problem was each of the following issues to you? Please circle the number/response that best applies.

2A. Patient’s previous problems (Before surgery)

213

Not a Very Very

Problem Minimal Mild Moderate Severe Severe

Now, my problems due to scoliosis are: 0 1 2 3 4 5

1. Effect on my physical appearance 0 1 2 3 4 5

i. Back looks curved or crooked 0 1 2 3 4 5

ii. Bump in the back or prominent ribs 0 1 2 3 4 5

iii. Shoulders not at same level 0 1 2 3 4 5

iv. Shoulder blades asymmetric 0 1 2 3 4 5

v. Chest or breasts not symmetrical 0 1 2 3 4 5

vi. Waistline is asymmetrical or

“hips” are not balanced

0 1 2 3 4 5

vii. Body leans to one side (trunk imbalance) 0 1 2 3 4 5

viii. Other aspects: 0 1 2 3 4 5

2. Back pain 0 1 2 3 4 5

3. Effect on my physical activities 0 1 2 3 4 5

4. Effect on my sports/recreation 0 1 2 3 4 5

5. Wearing a brace 0 1 2 3 4 5

6. Problems with my emotions 0 1 2 3 4 5

7. Effect on my self esteem (the way I felt about myself)

0 1 2 3 4 5

8. Effect on my relationships/friendships

0 1 2 3 4 5

9. Other problems: 0 1 2 3 4 5

10. Other problems: 0 1 2 3 4 5

Since surgery, how much of a problem is each of the following issues to you now?

Please circle the number/response that best applies.

2B. Patient’s present problems (After surgery)

214

Extremely Very Very Extremely

If I had not had surgery, the problems Unlikely Unlikely Unlikely Possible Likely Likely Likely Don’t

I might have had in the future Never (<1%) (1-5%) (5-25%) (25-50%) (50-75%) (75-95%) (95-100%) Know

because of scoliosis are: 0 1 2 3 4 5 6 7 DK

1. Physical appearance might worsen in the future

0 1 2 3 4 5 6 7 DK

2. Develop back pain in the future 0 1 2 3 4 5 6 7 DK

3. Restricted physical activities in the future

0 1 2 3 4 5 6 7 DK

4. Restricted participation in sports/recreation in the future

0 1 2 3 4 5 6 7 DK

5. Emotional or psychological problems in the future

0 1 2 3 4 5 6 7 DK

6. Self esteem might be affected (the way I feel about myself)

0 1 2 3 4 5 6 7 DK

7. Problems with relationships/marriage

0 1 2 3 4 5 6 7 DK

8. Problems with pregnancy/childbirth

0 1 2 3 4 5 6 7 DK

9. Difficulties with sexual function 0 1 2 3 4 5 6 7 DK

10. Employment/career might be affected

0 1 2 3 4 5 6 7 DK

11. Lung and heart problems in the future

0 1 2 3 4 5 6 7 DK

12. General health might be affected in the future

0 1 2 3 4 5 6 7 DK

13. Shorter life 0 1 2 3 4 5 6 7 DK

14. Other problems: 0 1 2 3 4 5 6 7 DK

15. Other problems: 0 1 2 3 4 5 6 7 DK

3A. Likelihood of future problems: Patient’s perspective (Before surgery)

Patients express many concerns for future problems that they believe might occur if their scoliosis is not treated. Before surgery, what did you think was the likelihood that this problem would occur if your scoliosis was not treated? Please circle the number/response that best applies.

215

Extremely Very Very Extremely

After surgery, the problems Unlikely Unlikely Unlikely Possible Likely Likely Likely Don’t

I might still have in the future Never (<1%) (1-5%) (5-25%) (25-50%) (50-75%) (75-95%) (95-100%) Know

because of scoliosis are: 0 1 2 3 4 5 6 7 DK

1. Physical appearance might worsen in the future

0 1 2 3 4 5 6 7 DK

2. Develop back pain in the future 0 1 2 3 4 5 6 7 DK

3. Restricted physical activities in the future

0 1 2 3 4 5 6 7 DK

4. Restricted participation in sports/recreation in the future

0 1 2 3 4 5 6 7 DK

5. Emotional or psychological problems in the future

0 1 2 3 4 5 6 7 DK

6. Self esteem might be affected (the way I feel about myself)

0 1 2 3 4 5 6 7 DK

7. Problems with relationships/marriage

0 1 2 3 4 5 6 7 DK

8. Problems with pregnancy/childbirth

0 1 2 3 4 5 6 7 DK

9. Difficulties with sexual function 0 1 2 3 4 5 6 7 DK

10. Employment/career might be affected

0 1 2 3 4 5 6 7 DK

11. Lung and heart problems in the future

0 1 2 3 4 5 6 7 DK

12. General health might be affected in the future

0 1 2 3 4 5 6 7 DK

13. Shorter life 0 1 2 3 4 5 6 7 DK

14. Other problems: 0 1 2 3 4 5 6 7 DK

15. Other problems: 0 1 2 3 4 5 6 7 DK

As a result of your surgery, what do you now believe is the likelihood that each of these problems might happen in the future? Please circle the number/response that best applies.

3B. Likelihood of future problems: Patient’s perspective (After surgery)

216

Very Not Very A little Somewhat Strongly Strongly Don’t at all Little Desired Desired Desired Desired Remember

What I hoped or wished to get from surgery was: 0 1 2 3 4 5 DR

1. To improve my physical appearance 0 1 2 3 4 5 DR

2. To prevent worsening of physical appearance 0 1 2 3 4 5 DR

3. To decrease my back pain 0 1 2 3 4 5 DR

4. To prevent future back pain 0 1 2 3 4 5 DR

5. To improve my physical activity 0 1 2 3 4 5 DR

6. To prevent restriction of future physical activity

0 1 2 3 4 5 DR

7. To improve my participation in sports/recreation

0 1 2 3 4 5 DR

8. To prevent restriction of future participation in sports/recreation

0 1 2 3 4 5 DR

9. To stop wearing a brace 0 1 2 3 4 5 DR

10. To improve my emotional well being 0 1 2 3 4 5 DR

11. To prevent future emotional and/or psychological problems

0 1 2 3 4 5 DR

12. To improve my self-esteem (the way I felt about myself)

0 1 2 3 4 5 DR

13. To prevent loss of self esteem in the future 0 1 2 3 4 5 DR

14. To improve my friendships and/or relationships

0 1 2 3 4 5 DR

15. To prevent problems with future relationships and/or marriage

0 1 2 3 4 5 DR

16. To prevent problems with pregnancy and/or childbirth

0 1 2 3 4 5 DR

17. To prevent problems with sexual function 0 1 2 3 4 5 DR

18. To improve employment and/or career opportunities

0 1 2 3 4 5 DR

19. To prevent future lung and heart problems 0 1 2 3 4 5 DR

20. To prevent future general health problems 0 1 2 3 4 5 DR

21. To prevent early mortality (death) 0 1 2 3 4 5 DR

22. Other goal: 0 1 2 3 4 5 DR

23. Other goal: 0 1 2 3 4 5 DR

4A. Reasons for undergoing surgery: Patient’s hopes, wishes or desires

Patients report several reasons for why they underwent surgery for scoliosis.

How much did you wish or desire that surgery would accomplish each of the following goals? Please circle the number/response that best applies.

217

Patient’s ranking of top 10 wishes from surgery (from 1 to 10)

1. To improve my physical appearance

2. To prevent worsening of physical appearance

3. To decrease my back pain

4. To prevent future back pain

5. To improve my physical activity

6. To prevent restriction of future physical activity

7. To improve my participation in sports/recreation

8. To prevent restriction of future participation in sports/recreation

9. To stop wearing a brace

10. To improve my emotional well being

11. To prevent future emotional and/or psychological problems

12. To improve my self-esteem (the way I felt about myself)

13. To prevent loss of self esteem in the future

14. To improve my friendships and/or relationships

15. To prevent problems with future relationships and/or marriage

16. To prevent problems with pregnancy and/or childbirth

17. To prevent problems with sexual function

18. To improve employment and/or career opportunities

19. To prevent future lung and heart problems

20. To prevent future general health problems

21. To prevent early mortality (death)

22. Other goal:

23. Other goal:

4B. Reasons for undergoing surgery: Patient’s hopes, wishes or desires

Patients report several reasons for why they underwent surgery for scoliosis.

Rank your top 10 wishes from surgery, in order of most to least important reason.

218

Extremely Very Very Extremely

Not a Unlikely Unlikely Unlikely Possible Likely Likely Likely Don’t

Before my surgery, I thought Problem (<1%) (1-5%) (5-25%) (25-50%) (50-75%) (75-95%) (95-100%) Know

surgery was likely to: 0 1 2 3 4 5 6 7 DK 1. Improve my physical appearance 0 1 2 3 4 5 6 7 DK

2. Prevent worsening of my physical appearance

0 1 2 3 4 5 6 7 DK

3. Decrease my back pain 0 1 2 3 4 5 6 7 DK

4. Prevent future back pain 0 1 2 3 4 5 6 7 DK

5. Improve my physical activity 0 1 2 3 4 5 6 7 DK

6. Prevent restriction of future physical activity

0 1 2 3 4 5 6 7 DK

7. Improve my participation in sports/recreation

0 1 2 3 4 5 6 7 DK

8. Prevent restriction of future participation in sports/recreation

0 1 2 3 4 5 6 7 DK

9. Eliminate need for a brace 0 1 2 3 4 5 6 7 DK

10. Improve my emotional well being 0 1 2 3 4 5 6 7 DK

11. Prevent future emotional and/or psychological problems

0 1 2 3 4 5 6 7 DK

12. Improve my self-esteem 0 1 2 3 4 5 6 7 DK

13. Prevent loss of self esteem in the future

0 1 2 3 4 5 6 7 DK

14. Improve my friendships and/or relationships

0 1 2 3 4 5 6 7 DK

15. Prevent problems with future relationships and/or marriage

0 1 2 3 4 5 6 7 DK

16. Prevent problems with pregnancy and/or childbirth

0 1 2 3 4 5 6 7 DK

17. Prevent problems with sexual function

0 1 2 3 4 5 6 7 DK

18. Improve my employment and/or career opportunities

0 1 2 3 4 5 6 7 DK

19. Prevent future lung and heart problems

0 1 2 3 4 5 6 7 DK

20. Prevent future general health problems

0 1 2 3 4 5 6 7 DK

21. Prevent early mortality (death) 0 1 2 3 4 5 6 7 DK

22. Other goal: 0 1 2 3 4 5 6 7 DK

23. Other goal: 0 1 2 3 4 5 6 7 DK

5A. Patient’s expectations of surgery: likelihood of results

Patient’s report several reasons for undergoing surgery for scoliosis. These are listed below.

How likely did you think surgery would accomplish each of these goals?

Please circle the number/response that best applies.

219

No Very Very

Change Small Small Moderate Large Large

The minimum amount of change or reduction (< 5%) (5%-25%) (25%-50%) (50%-75%) (75%-100%)

of future risk that I would have accepted: 0 1 2 3 4 5

1. Improvement of my physical appearance 0 1 2 3 4 5

2. Prevention of worse of physical appearance 0 1 2 3 4 5

3. Reduction of my back pain 0 1 2 3 4 5

4. Prevention of future back pain 0 1 2 3 4 5

5. Improvement of my physical activity 0 1 2 3 4 5

6. Prevention of future physical activity restriction

0 1 2 3 4 5

7. Improvement in my participation in sports 0 1 2 3 4 5

8. Prevention of future restriction in sports participation

0 1 2 3 4 5

9. Prevention of brace wear 0 1 2 3 4 5

10. Improvement in my emotional and/or psychological well being

0 1 2 3 4 5

11. Prevention of future emotional and/or psychological problems

0 1 2 3 4 5

12. Improvement of my self-esteem 0 1 2 3 4 5

13. Prevention of future loss of self esteem 0 1 2 3 4 5

14. Improvement of my friendships and/or relationships

0 1 2 3 4 5

15. Prevention of problems with future relationships and/or marriage

0 1 2 3 4 5

16. Prevention of problems with pregnancy and/or childbirth

0 1 2 3 4 5

17. Prevention of problems with sexual function 0 1 2 3 4 5

18. Improvement in my employment and/or career opportunities

0 1 2 3 4 5

19. Prevention of future lung and heart problems 0 1 2 3 4 5

20. Prevention of future general health problems 0 1 2 3 4 5

21. Prevention of early mortality (death) 0 1 2 3 4 5

22. Other outcome: 0 1 2 3 4 5

23. Other outcome: 0 1 2 3 4 5

5B. Patient’s expectations of surgery: magnitude of results expected

For each goal, what was the minimum change (improvement or reduction of future risk) that you would have accepted to be satisfied?

Please circle the number/response that best applies.

220

Not at all Hardly Slightly Somewhat Very Extremely Don’t

Concerned Concerned Concerned Concerned Concerned Concerned Remember Short term problems & risks (up to 3 months) 0 1 2 3 4 5 DR

1. Pain after surgery 0 1 2 3 4 5 DR

2. Unpleasant scar 0 1 2 3 4 5 DR

3. Back stiffness 0 1 2 3 4 5 DR

4. Restricted physical activities 0 1 2 3 4 5 DR

5. Infection (early) 0 1 2 3 4 5 DR

6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5 DR

7. Loss of privacy and independence 0 1 2 3 4 5 DR

8. Risks of blood transfusion 0 1 2 3 4 5 DR

9. Sensory changes or muscle weakness (short term)

0 1 2 3 4 5 DR

10. Paralysis (temporary) 0 1 2 3 4 5 DR

11. Death 0 1 2 3 4 5 DR

12. Other concerns: 0 1 2 3 4 5 DR

Long term risks (1 year after surgery to rest of your life)

1. Back pain in the future 0 1 2 3 4 5 DR

2. Unpleasant scar 0 1 2 3 4 5 DR

3. Partial or unsatisfactory correction 0 1 2 3 4 5 DR

4. Back stiffness (lacking flexibility) 0 1 2 3 4 5 DR

5. Restricted physical activities 0 1 2 3 4 5 DR

6. Infection (late) 0 1 2 3 4 5 DR

7. Rods/hooks might cause problems 0 1 2 3 4 5 DR

8. Spine might not fuse properly 0 1 2 3 4 5 DR

9. Deformity might recur or worsen 0 1 2 3 4 5 DR

10. Risks of blood transfusion 0 1 2 3 4 5 DR

11. Sensory changes or muscle weakness (permanent)

0 1 2 3 4 5 DR

12. Paralysis (permanent) 0 1 2 3 4 5 DR

13. Need for another operation 0 1 2 3 4 5 DR

14. Other concerns: 0 1 2 3 4 5 DR

Patients express many concerns regarding the adverse effects and risks of scoliosis surgery.

Before surgery, how concerned were you about surgery resulting in any of these adverse outcomes?

Please circle the number/response that best applies.

6A. Patient’s concerns regarding scoliosis surgery: magnitude of concern

221

Extremely Very Very Extremely Don’t

Unlikely Unlikely Unlikely Possible Likely Likely Likely Remember

Likelihood of short term problems & risks Never (<1%) (1-5%) (5-25%) (25-50%) (50-75%) (75-95%) (95-100%) (up to 3 months after surgery) 0 1 2 3 4 5 6 7 DR

1. Pain after surgery 0 1 2 3 4 5 6 7 DR

2. Unpleasant scar 0 1 2 3 4 5 6 7 DR

3. Back stiffness 0 1 2 3 4 5 6 7 DR

4. Restricted physical activities 0 1 2 3 4 5 6 7 DR

5. Infection 0 1 2 3 4 5 6 7 DR

6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5 6 7 DR

7. Loss of privacy and independence 0 1 2 3 4 5 6 7 DR

8. Risks of blood transfusion 0 1 2 3 4 5 6 7 DR

9. Sensory changes or muscle weakness (short term)

0 1 2 3 4 5 6 7 DR

10. Paralysis (temporary) 0 1 2 3 4 5 6 7 DR

11. Death 0 1 2 3 4 5 6 7 DR

12. Other concerns: 0 1 2 3 4 5 6 7 DR

Likelihood of long term risks (1 year after surgery to rest of your life)

1. Back pain in the future 0 1 2 3 4 5 6 7 DR

2. Unpleasant scar 0 1 2 3 4 5 6 7 DR

3. Partial or unsatisfactory correction 0 1 2 3 4 5 6 7 DR

4. Back stiffness (lacking flexibility) 0 1 2 3 4 5 6 7 DR

5. Restricted physical activities 0 1 2 3 4 5 6 7 DR

6. Infection (late) 0 1 2 3 4 5 6 7 DR

7. Rods/hooks might cause problems 0 1 2 3 4 5 6 7 DR

8. Spine might not fuse properly 0 1 2 3 4 5 6 7 DR

9. Deformity might recur or worsen 0 1 2 3 4 5 6 7 DR

10. Risks of blood transfusion 0 1 2 3 4 5 6 7 DR

11. Sensory changes or muscle weakness (permanent)

0 1 2 3 4 5 6 7 DR

12. Paralysis (permanent) 0 1 2 3 4 5 6 7 DR

13. Need for another operation 0 1 2 3 4 5 6 7 DR

14. Other concerns: 0 1 2 3 4 5 6 7 DR

Patients express many concerns regarding the adverse effects and risks of scoliosis surgery.

Before surgery, how likely did you believe that surgery could result in any of these outcomes?

Please circle the number/response that best applies.

6B. Patient’s concerns regarding scoliosis surgery: likelihood of risks

222

Much Moderately Slightly No Slightly Moderately Much Worse Worse Worse Change Better Better Better

As a results of surgery my __________ is: -3 -2 -1 0 +1 +2 +3 1. My physical appearance -3 -2 -1 0 +1 +2 +3

i. Straightened or decreased curve of my back -3 -2 -1 0 +1 +2 +3

ii. Decreased the prominence or bump in the back -3 -2 -1 0 +1 +2 +3

iii. Leveled my shoulders -3 -2 -1 0 +1 +2 +3

iv. Corrected shoulder blade symmetry -3 -2 -1 0 +1 +2 +3

v. Corrected the chest/breast asymmetry -3 -2 -1 0 +1 +2 +3

vi. Balanced the waistline or “hips” -3 -2 -1 0 +1 +2 +3

vii. Corrected the leaning of the body to one side -3 -2 -1 0 +1 +2 +3

viii. My height -3 -2 -1 0 +1 +2 +3

ix. Other aspects: -3 -2 -1 0 +1 +2 +3

2. Back pain -3 -2 -1 0 +1 +2 +3

3. My level of physical activity -3 -2 -1 0 +1 +2 +3

4. My participation in sports -3 -2 -1 0 +1 +2 +3

5. Brace wear -3 -2 -1 0 +1 +2 +3

6. My emotional well being -3 -2 -1 0 +1 +2 +3

7. My self-esteem (the way I feel about myself) -3 -2 -1 0 +1 +2 +3

8. My friendships/relationships -3 -2 -1 0 +1 +2 +3

As a result of my surgery, my Much Moderately Slightly No Slightly Moderately Much risk of future problems is now: Worse Worse Worse Change Better Better Better 1. Physical appearance worsening in the future -3 -2 -1 0 +1 +2 +3

2. Future back pain -3 -2 -1 0 +1 +2 +3

3. Restriction of future physical activity -3 -2 -1 0 +1 +2 +3

4. Restriction of future participation in sports -3 -2 -1 0 +1 +2 +3

5. Future emotional/psychological problems -3 -2 -1 0 +1 +2 +3

6. Future problems with self-esteem -3 -2 -1 0 +1 +2 +3

7. Problems with future relationships/marriage -3 -2 -1 0 +1 +2 +3

8. Problems with pregnancy/childbirth -3 -2 -1 0 +1 +2 +3

9. Problems with sexual function -3 -2 -1 0 +1 +2 +3

10. Problems with employment/career opportunities

-3 -2 -1 0 +1 +2 +3

11. Future lung and heart problems -3 -2 -1 0 +1 +2 +3

12. Problems with general health -3 -2 -1 0 +1 +2 +3

13. Shorter life span -3 -2 -1 0 +1 +2 +3

7A. Results of surgery: magnitude of change experiencedAs a result of your surgery, how much change have you experienced for each characteristic listed? Please circle the number/response that best applies.

How much, do you believe, has surgery reduced the risk of future problems?

223

Neither dissatisfied

Very Moderately Slightly nor Slightly Moderately Very As a result of my surgery, Dissatisfied Dissatisfied Dissatisfied Satisfied Satisfied Satisfied Satisfied I am ___________ with my: -3 -2 -1 0 +1 +2 +3

1. My physical appearance -3 -2 -1 0 +1 +2 +3

i. Straightened or decreased curve of my back -3 -2 -1 0 +1 +2 +3

ii. Decreased the prominence or bump in the back -3 -2 -1 0 +1 +2 +3

iii. Leveled my shoulders -3 -2 -1 0 +1 +2 +3

iv. Corrected shoulder blade symmetry -3 -2 -1 0 +1 +2 +3

v. Corrected the chest/breast asymmetry -3 -2 -1 0 +1 +2 +3

vi. Balanced the waistline or “hips” -3 -2 -1 0 +1 +2 +3

vii. Corrected the leaning of the body to one side -3 -2 -1 0 +1 +2 +3

viii. Increased my height -3 -2 -1 0 +1 +2 +3

ix. Other aspects: -3 -2 -1 0 +1 +2 +3

2. Back pain -3 -2 -1 0 +1 +2 +3

3. My level of physical activity -3 -2 -1 0 +1 +2 +3

4. My participation in sports -3 -2 -1 0 +1 +2 +3

5. Brace wear -3 -2 -1 0 +1 +2 +3

6. My emotional well being -3 -2 -1 0 +1 +2 +3

7. My self-esteem (the way I feel about myself) -3 -2 -1 0 +1 +2 +3

8. My friendships/relationships -3 -2 -1 0 +1 +2 +3

Neither dissatisfied

Very Moderately Slightly nor Slightly Moderately Very As a result of surgery I am ______________ Dissatisfied Dissatisfied Dissatisfied Satisfied Satisfied Satisfied Satisfiedwith the reduction of risk for future problem -3 -2 -1 0 +1 +2 +3 1. Physical appearance worsening in the future -3 -2 -1 0 +1 +2 +3

2. Future back pain -3 -2 -1 0 +1 +2 +3

3. Restriction of future physical activity -3 -2 -1 0 +1 +2 +3

4. Restriction of future participation in sports -3 -2 -1 0 +1 +2 +3

5. Future emotional/psychological problems -3 -2 -1 0 +1 +2 +3

6. Future problems with self-esteem -3 -2 -1 0 +1 +2 +3

7. Problems with future relationships/marriage -3 -2 -1 0 +1 +2 +3

8. Problems with pregnancy/childbirth -3 -2 -1 0 +1 +2 +3

9. Problems with sexual function -3 -2 -1 0 +1 +2 +3

10. Problems with employment/career opportunities

-3 -2 -1 0 +1 +2 +3

11. Future lung and heart problems -3 -2 -1 0 +1 +2 +3

12. Problems with general health -3 -2 -1 0 +1 +2 +3

13. Shorter life span -3 -2 -1 0 +1 +2 +3

7B. Satisfaction with results: Patient’s perspective

How satisfied are you with each of the results? Please circle the number/response that best applies.

224

1. 2. 3. 4. 5. 6. 7. 8. 9. 10.

THANK YOU VERY MUCH FOR YOUR TIME AND PATIENCE COMPLETING THIS SURVEY !

8. Outcomes of surgery: any surprises?

What, if any, surprises or unexpected events have you experienced following surgery?

Please list both pleasant and unpleasant surprises that you have experienced.

225

Post-Operative Survey of Idiopathic Scoliosis Patients:

Parental Questionnaire (2 years after surgery)

226

We have read and understood the above statement. Our questions have been answered.

We are willing to participate in the interview. We understand that we can withdraw from participation at any time.

We realize that the interview will be kept strictly confidential with access restricted only to the researchers. Our

identity will not be revealed in any published or presented results.

In the event of any other questions or concerns we can contact Dr. Unni Narayanan at (416) 813-7654 Extn:3196

or Sam Donaldson at (416) 813-7654 Extn: 3156.

Name of Patient: Date

Name & Signature of Mother/guardian:

Name & Signature of Father/guardian:

Name & Signature of Physician/Researcher obtaining consent:

PARENT CONSENT FORM

227

Before surgery

Because of our child’s Not at all Hardly Slightly Somewhat Very Extremely Don’t Child’s

scoliosis we/I were _________ Concerned Concerned Concerned Concerned Concerned Concerned Remember Rating*

concerned about her/his: 0 1 2 3 4 5 DR (0 to 5, DK)

1. Physical appearance at the time 0 1 2 3 4 5 DR

2. Physical appearance in the future 0 1 2 3 4 5 DR

3. Back pain at the time 0 1 2 3 4 5 DR

4. Risk of back pain in the future 0 1 2 3 4 5 DR

5. Physical activity at the time 0 1 2 3 4 5 DR

6. Future physical activity 0 1 2 3 4 5 DR

7. Sports/recreation at the time 0 1 2 3 4 5 DR

8. Future sports/recreation 0 1 2 3 4 5 DR

9. Having to wear a brace 0 1 2 3 4 5 DR

10. Emotional/psychological well being 0 1 2 3 4 5 DR

11. Future emotional/psychological well being

0 1 2 3 4 5 DR

12. Self-esteem at the time (the way I felt about myself)

0 1 2 3 4 5 DR

13. Self esteem in the future 0 1 2 3 4 5 DR

14. Friendships/relationships at the time

0 1 2 3 4 5 DR

15. Future relationships/marriage 0 1 2 3 4 5 DR

16. Pregnancy/childbirth 0 1 2 3 4 5 DR

17. Sexual function 0 1 2 3 4 5 DR

18. Employment/career 0 1 2 3 4 5 DR

19. Risk of future lung and heart problems

0 1 2 3 4 5 DR

20. Future general health problems 0 1 2 3 4 5 DR

21. Having a shorter life 0 1 2 3 4 5 DR

22. Other issue: 0 1 2 3 4 5 DR

23. Other issue: 0 1 2 3 4 5 DR

Parents of patients with scoliosis report many concerns regarding their child’s condition. Before your child’s surgery, how concerned were you about the following issues? *How concerned do you think your child* was regarding each of these issues? Not all concerned (0); Hardly concerned (1); Slightly concerned(2); Somewhat concerned(3); Very concerned(4); Extremely concerned(5); Don’t remember (DR); Don’t know (DK) Please circle the number/response that best applies.

IA. Parents’ concerns regarding scoliosis (Previous concerns)

228

After surgery

Because of our child’s Not at all Hardly Slightly Somewhat Very Extremely No Child’s

scoliosis we are now _________ Concerned Concerned Concerned Concerned Concerned Concerned Change Rating*

concerned about her/his: 0 1 2 3 4 5 NC (0 to 5, DK)

1. Physical appearance at present 0 1 2 3 4 5 NC

2. Physical appearance in the future 0 1 2 3 4 5 NC

3. Back pain at present 0 1 2 3 4 5 NC

4. Risk of back pain in the future 0 1 2 3 4 5 NC

5. Physical activity at present 0 1 2 3 4 5 NC

6. Future physical activity 0 1 2 3 4 5 NC

7. Sports/recreation at present 0 1 2 3 4 5 NC

8. Future sports/recreation 0 1 2 3 4 5 NC

9. Having to wear a brace 0 1 2 3 4 5 NC

10. Emotional/psychological well being 0 1 2 3 4 5 NC

11. Future emotional/psychological well being

0 1 2 3 4 5 NC

12. Self-esteem at present 0 1 2 3 4 5 NC

13. Self esteem in the future 0 1 2 3 4 5 NC

14. Friendships/relationships at present

0 1 2 3 4 5 NC

15. Future relationships/marriage 0 1 2 3 4 5 NC

16. Pregnancy/childbirth 0 1 2 3 4 5 NC

17. Sexual function 0 1 2 3 4 5 NC

18. Employment/career 0 1 2 3 4 5 NC

19. Risk of future lung and heart problems

0 1 2 3 4 5 NC

20. Future general health problems 0 1 2 3 4 5 NC

21. Having a shorter life 0 1 2 3 4 5 NC

22. Other issue: 0 1 2 3 4 5 NC

23. Other issue: 0 1 2 3 4 5 NC

Parents of patients with scoliosis report many concerns regarding their child’s condition. Since your child’s surgery, how concerned are you about the following issues now? *How concerned do you think your child* is regarding each of these issues now? Not all concerned (0); Hardly concerned (1); Slightly concerned(2); Somewhat concerned(3); Very concerned(4); Extremely concerned(5); Don’t know (DK) Please circle the number/response that best applies.

IB. Parents’ concerns regarding scoliosis (Present concerns)

229

Not a Very Very Don’t Child’s

Before surgery, our child’s Problem Minimal Mild Moderate Severe Severe Remember Rating* problems due to scoliosis were: 0 1 2 3 4 5 DR (0 to 5,DR)

1. Effect on physical appearance 0 1 2 3 4 5 DR

i. Back looked curved or crooked 0 1 2 3 4 5 DR

ii. Bump in the back or prominent ribs 0 1 2 3 4 5 DR

iii. Shoulders not at same level 0 1 2 3 4 5 DR

iv. Shoulder blades asymmetric 0 1 2 3 4 5 DR

v. Chest or breasts not symmetrical 0 1 2 3 4 5 DR

vi. Waistline is asymmetrical or

“hips” are not balanced

0 1 2 3 4 5 DR

vii. Body leaned to one side 0 1 2 3 4 5 DR

viii. Other aspects: 0 1 2 3 4 5 DR

2. Back pain 0 1 2 3 4 5 DR

3. Effect on physical activities 0 1 2 3 4 5 DR

4. Effect on sports/recreation 0 1 2 3 4 5 DR

5. Wearing a brace 0 1 2 3 4 5 DR

6. Problems with emotions 0 1 2 3 4 5 DR

7. Effect on self esteem (the way our child felt about her or himself)

0 1 2 3 4 5 DR

8. Effect on relationships/friendships 0 1 2 3 4 5 DR

9. Other problems: 0 1 2 3 4 5 DR

10. Other problems: 0 1 2 3 4 5 DR

Patients experience certain problems or difficulties that they or their parents believe are related to, or caused by scoliosis. Before surgery, how much of a problem did you think each of the following issues was for your child?

*Before surgery, how much of a problem did your child* think each of the following issues was?

Not a problem(0); Minimal(1); Mild(2); Moderate(3); Severe(4); Extremely severe(5); Don’t remember(DR) Please circle the number/response that best applies.

IIA. The patient’s previous problems: Parents’ perspective (Before surgery)

230

Not a Very Very No Child’s

Since surgery, our child’s present Problem Minimal Mild Moderate Severe Severe Change Rating* problems due to scoliosis are: 0 1 2 3 4 5 NC (0 to 5,NC)

1. Effect on physical appearance 0 1 2 3 4 5 NC

i. Back looks curved or crooked 0 1 2 3 4 5 NC

ii. Bump in the back or prominent ribs 0 1 2 3 4 5 NC

iii. Shoulders not at same level 0 1 2 3 4 5 NC

iv. Shoulder blades asymmetric 0 1 2 3 4 5 NC

v. Chest or breasts not symmetrical 0 1 2 3 4 5 NC

vii. Waistline is asymmetrical or

“hips” are not balanced

0 1 2 3 4 5 NC

vii. Body leans to one side (trunk imbalance) 0 1 2 3 4 5 NC

viii. Other aspects: 0 1 2 3 4 5 NC

2. Back pain 0 1 2 3 4 5 NC

3. Effect on physical activities 0 1 2 3 4 5 NC

4. Effect on participation in sports 0 1 2 3 4 5 NC

5. Wearing a brace 0 1 2 3 4 5 NC

6. Problems with emotions 0 1 2 3 4 5 NC

7. Effect on self esteem (the way my child felt about her or himself)

0 1 2 3 4 5 NC

8. Effect on relationships/friendships 0 1 2 3 4 5 NC

9. Other problems: 0 1 2 3 4 5 NC

10. Other problems: 0 1 2 3 4 5 NC

After surgery, how much of a problem do you think each of these issues is for your child now? *After surgery, how much of a problem does your child* think each of following issues is now? Not a problem(0); Minimal(1); Mild(2); Moderate(3); Severe(4); Extremely severe(5); No change(NC) Please circle the number/response that best applies.

IIB. The patient’s present problems: Parents’ perspective (After surgery)

231 Child’s If our child had not had surgery, Not a Extremely Very Very Extremely Don’t Rating of the problems she/he might have had Problem Unlikely Unlikely Unlikely Possible Likely Likely Likely Know Likelihood* in the future because of scoliosis are: 0 1 2 3 4 5 6 7 DK (0 to 7, DK)

1. Physical appearance might worsen in the future

0 1 2 3 4 5 6 7 DK

2. Develop back pain in the future 0 1 2 3 4 5 6 7 DK

3. Restricted physical activities in the future

0 1 2 3 4 5 6 7 DK

4. Restricted participation in sports in the future

0 1 2 3 4 5 6 7 DK

5. Emotional or psychological problems in the future

0 1 2 3 4 5 6 7 DK

6. Self esteem might be affected (the way my child felt about her or himself)

0 1 2 3 4 5 6 7 DK

7. Problems with relationships/marriage

0 1 2 3 4 5 6 7 DK

8. Problems with pregnancy/childbirth

0 1 2 3 4 5 6 7 DK

9. Difficulties with sexual function 0 1 2 3 4 5 6 7 DK

10. Employment/career might be affected

0 1 2 3 4 5 6 7 DK

11. Lung and heart problems in the future

0 1 2 3 4 5 6 7 DK

12. General health might be affected in the future

0 1 2 3 4 5 6 7 DK

13. Shorter life span 0 1 2 3 4 5 6 7 DK

14. Other problems: 0 1 2 3 4 5 6 7 DK

15. Other problems: 0 1 2 3 4 5 6 7 DK

IIIA. Likelihood of future problems: Parents’ perspective (Before surgery)

Parents express many concerns about future problems that they believe might occur if their child’s scoliosis is not treated. Before surgery, what did you think was the likelihood that this problem would occur if your child’s scoliosis was not treated?

*Before surgery, what did your child* think was the likelihood that this problem would occur if the scoliosis was not treated?

Not a problem(0);Extremely unlikely:<1%(1);Very unlikely:1%-5%(2);Unlikely:5%-25%(3);

Possible:25%to 50%(4); Likely:50%-75%(5); Very likely:75%-95%(6); Extremely likely:95%-100%(7);

Don’t know(DK) Please circle the number/response that best applies.

232

Child’s Since surgery, the problems that Not a Extremely Very Very Extremely Don’t Rating of our child might still have in the future Problem Unlikely Unlikely Unlikely Possible Likely Likely Likely Know Likelihood* because of scoliosis are: 0 1 2 3 4 5 6 7 DK (0 to 7, DK)

1. Physical appearance might worsen in the future

0 1 2 3 4 5 6 7 DK

2. Develop back pain in the future 0 1 2 3 4 5 6 7 DK

3. Restricted physical activities in the future

0 1 2 3 4 5 6 7 DK

4. Restricted participation in sports in the future

0 1 2 3 4 5 6 7 DK

5. Emotional or psychological problems in the future

0 1 2 3 4 5 6 7 DK

6. Self esteem might be affected (the way my child felt about her or himself)

0 1 2 3 4 5 6 7 DK

7. Problems with relationships/marriage

0 1 2 3 4 5 6 7 DK

8. Problems with pregnancy/childbirth

0 1 2 3 4 5 6 7 DK

9. Difficulties with sexual function 0 1 2 3 4 5 6 7 DK

10. Employment/career might be affected

0 1 2 3 4 5 6 7 DK

11. Lung and heart problems in the future

0 1 2 3 4 5 6 7 DK

12. General health might be affected in the future

0 1 2 3 4 5 6 7 DK

13. Shorter life span 0 1 2 3 4 5 6 7 DK

14. Other problems: 0 1 2 3 4 5 6 7 DK

15. Other problems: 0 1 2 3 4 5 6 7 DK

Patients and their parents express certain concerns for future problems that they believe might occur if the scoliosis is not treated. As a result of the surgery, what do you now believe is the likelihood that each of these problems might occur in the future?

*As a result of the surgery, what your child* now think is the likelihood that each of these problems might occur in the future?

Not a problem(0);Extremely unlikely:<1%(1);Very unlikely:1%-5%(2);Unlikely:5%-25%(3);

Possible:25%to 50%(4); Likely:50%-75%(5); Very likely:75%-95%(6); Extremely likely:95%-100%(7);

Don’t know(DK) Please circle the number/response that best applies.

IIIB. Likelihood of future problems: Parents’ perspective (After surgery)

233

Very Strength Not at all Hardly Slightly Somewhat Strongly Strongly of Child’s

What we hoped or wished that surgery Desired Desired Desired Desired Desired Desired Wishes*

would accomplish for our child was: 0 1 2 3 4 5 (0 to 5,DK)

1. Improve our child’s physical appearance 0 1 2 3 4 5

2. Prevent worsening of physical appearance 0 1 2 3 4 5

3. Decrease our child’s back pain 0 1 2 3 4 5

4. Prevent future back pain 0 1 2 3 4 5

5. Improve our child’s physical activity 0 1 2 3 4 5

6. Prevent restriction of future physical activity

0 1 2 3 4 5

7. Improve our child’s participation in sports/recreation

0 1 2 3 4 5

8. Prevent restriction of future participation in sports/recreation

0 1 2 3 4 5

9. Stop our child wearing a brace 0 1 2 3 4 5

10. Improve our child’s emotional well being 0 1 2 3 4 5

11. Prevent future emotional and/or psychological problems

0 1 2 3 4 5

12. Improve our child’s self-esteem (the way our child felt about her or himself)

0 1 2 3 4 5

13. Prevent loss of self esteem in the future 0 1 2 3 4 5

14. Improve our child’s friendships and/or relationships

0 1 2 3 4 5

15. Prevent problems with future relationships and/or marriage

0 1 2 3 4 5

16. Prevent problems with pregnancy and/or childbirth

0 1 2 3 4 5

17. Prevent problems with sexual function 0 1 2 3 4 5

18. Improve our child’s employment and/or career opportunities

0 1 2 3 4 5

19. Prevent future lung and heart problems 0 1 2 3 4 5

20. Prevent future general health problems 0 1 2 3 4 5

21. Prevent early mortality (death) 0 1 2 3 4 5

22. Other goal: 0 1 2 3 4 5

23. Other goal: 0 1 2 3 4 5

IVA. Reasons for undergoing surgery: Parents’ hopes, wishes or desires

Parents report several reasons for why they chose surgery for treatment of their child’s scoliosis.

To what extent did you wish or desire that surgery would accomplish each of the following goals for your child? *To what extent did your child wish or desire* that surgery would accomplish each of the goals?

Not at all desired(0), Hardly desired(1); Slightly desired(2); Somewhat desired(3); Strongly desired (4);

Very strongly desired(5); Don’t know(DK) Please circle the number/response that best applies.

234

Parents’ ranking *Parents’ ranking of their of their top 10 wishes (from 1 to 10) child’s top 10 wishes (from1 to 10)

1. Improve our child’s physical appearance

2. Prevent worsening of physical appearance

3. Decrease our child’s back pain

4. Prevent future back pain

5. Improve our child’s physical activity

6. Prevent restriction of future physical activity

7. Improve our child’s participation in sports/recreation

8. Prevent restriction of future participation in sports/recreation

9. Stop our child wearing a brace

10. Improve our child’s emotional well being

11. Prevent future emotional and/or psychological problems

12. Improve our child’s self-esteem (the way our child felt about her or himself)

13. Prevent loss of self esteem in the future

14. Improve our child’s friendships and/or relationships

15. Prevent problems with future relationships and/or marriage

16. Prevent problems with pregnancy and/or childbirth

17. Prevent problems with sexual function

18. Improve our child’s employment and/or career opportunities

19. Prevent future lung and heart problems

20. Prevent future general health problems

21. Prevent early mortality (death)

22. Other goal:

23. Other goal:

IVB. Reasons for undergoing surgery: Parents’ hopes, wishes or desires

Rank your top 10 wishes from surgery for your child’s scoliosis, in order of most to least important wish. *Rank your child’s* top 10 wishes from surgery for scoliosis, in order of most to least important wish.

235

Extremely Very Very Extremely Don’t

Before our child’s surgery we Never Unlikely Unlikely Unlikely Possible Likely Likely Likely Know

thought surgery was likely to: 0 1 2 3 4 5 6 7 DK 1. Improve our child’s physical

appearance 0 1 2 3 4 5 6 7 DK

2. Prevent worsening of physical appearance in the future

0 1 2 3 4 5 6 7 DK

3. Decrease our child’s back pain 0 1 2 3 4 5 6 7 DK

4. Prevent future back pain 0 1 2 3 4 5 6 7 DK

5. Improve our child’s physical activity

0 1 2 3 4 5 6 7 DK

6. Prevent restriction of future physical activity

0 1 2 3 4 5 6 7 DK

7. Improve our child’s participation in sports/recreation

0 1 2 3 4 5 6 7 DK

8. Prevent restriction of future participation in sports/recreation

0 1 2 3 4 5 6 7 DK

9. Stop our child wearing a brace 0 1 2 3 4 5 6 7 DK

10. Improve our child’s emotional well being

0 1 2 3 4 5 6 7 DK

11. Prevent future emotional and/or psychological problems

0 1 2 3 4 5 6 7 DK

12. Improve our child’s self-esteem (the way our child felt about her or himself)

0 1 2 3 4 5 6 7 DK

13. Prevent loss of self esteem in the future

0 1 2 3 4 5 6 7 DK

14. Improve our child’s friendships and/or relationships

0 1 2 3 4 5 6 7 DK

15. Prevent problems with future relationships and/or marriage

0 1 2 3 4 5 6 7 DK

16. Prevent problems with pregnancy and/or childbirth

0 1 2 3 4 5 6 7 DK

17. Prevent problems with sexual function

0 1 2 3 4 5 6 7 DK

18. Improve our child’s employment and/or career opportunities

0 1 2 3 4 5 6 7 DK

19. Prevent future lung and heart problems

0 1 2 3 4 5 6 7 DK

20. Prevent future general health problems

0 1 2 3 4 5 6 7 DK

21. Prevent early mortality (death) 0 1 2 3 4 5 6 7 DK

22. Other goal: 0 1 2 3 4 5 6 7 DK

23. Other goal: 0 1 2 3 4 5 6 7 DK

VA. Parents’ expectations of surgery: likelihood of results

Parents report several reasons for why they chose surgery for treatment of their child’s scoliosis.

How likely did you think surgery would accomplish each of these goals for your child? Never(0); Extremely unlikely:<1%(1); Very unlikely:1%-5%(2); Unlikely:5%-25%(3); Possible:25%to50%(4);

Likely:50%-75%(5); Very likely:75%-95%(6); Extremely likely:95%-100%(7); Don’t know(DK)

Please circle the number/response that best applies.

236

No Very Very

The minimum amount of change or reduction of Change Little Some Moderate Large Large future risk that we would have accepted for our child: 0 1 2 3 4 5

1. Improve our child’s physical appearance 0 1 2 3 4 5

2. Prevent worsening of physical appearance 0 1 2 3 4 5

3. Decrease our child’s back pain 0 1 2 3 4 5

4. Prevent future back pain 0 1 2 3 4 5

5. Improve our child’s physical activity 0 1 2 3 4 5

6. Prevent restriction of future physical activity

0 1 2 3 4 5

7. Improve our child’s participation in sports/recreation

0 1 2 3 4 5

8. Prevent restriction of future participation in sports/recreation

0 1 2 3 4 5

9. Stop our child wearing a brace 0 1 2 3 4 5

10. Improve our child’s emotional well being 0 1 2 3 4 5

11. Prevent future emotional and/or psychological problems

0 1 2 3 4 5

12. Improve our child’s self-esteem (the way our child felt about her or himself)

0 1 2 3 4 5

13. Prevent loss of self esteem in the future 0 1 2 3 4 5

14. Improve our child’s friendships and/or relationships

0 1 2 3 4 5

15. Prevent problems with future relationships and/or marriage

0 1 2 3 4 5

16. Prevent problems with pregnancy and/or childbirth

0 1 2 3 4 5

17. Prevent problems with sexual function 0 1 2 3 4 5 18. Improve our child’s employment and/or career opportunities

0 1 2 3 4 5

19. Prevent future lung and heart problems 0 1 2 3 4 5

20. Prevent future general health problems 0 1 2 3 4 5

21. Prevent early mortality (death) 0 1 2 3 4 5

22. Other goal: 0 1 2 3 4 5

23. Other goal: 0 1 2 3 4 5

VB. Parents’ expectations of surgery: magnitude of results expected

Parents report several reasons for why they chose surgery for treatment of their child’s scoliosis. For each reason, what was the minimum change (improvement or reduction of future risk) for your child, that you would have accepted to be satisfied?

No change (0); Very small:< 5%(1); Small:5%to25%(2); Moderate:25%to50%(3); Large:50% to 75%(4);

Very large:75% to 100%(5) Please circle the number/response that best applies.

237

Not at all Hardly Slightly Somewhat Very Extremely Child’s

Concerned Concerned Concerned Concerned Concerned Concerned Concern* Short term problems & risks 0 1 2 3 4 5 (0 to 5,DK)

1. Pain after surgery 0 1 2 3 4 5

2. Unpleasant scar 0 1 2 3 4 5

3. Back stiffness 0 1 2 3 4 5

4. Restricted physical activities 0 1 2 3 4 5

5. Infection (early) 0 1 2 3 4 5

6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5

7. Loss of privacy and independence 0 1 2 3 4 5

8. Risks of blood transfusion 0 1 2 3 4 5

9. Sensory changes or muscle weakness (short term)

0 1 2 3 4 5

10. Paralysis (temporary) 0 1 2 3 4 5

11. Death 0 1 2 3 4 5

12. Other concerns: 0 1 2 3 4 5

Long term risks (1 year after surgery to rest of your life)

1. Back pain in the future 0 1 2 3 4 5

2. Unpleasant scar 0 1 2 3 4 5

3. Partial or unsatisfactory correction 0 1 2 3 4 5

4. Back stiffness (lacking flexibility) 0 1 2 3 4 5

5. Restricted physical activities 0 1 2 3 4 5

6. Infection (late) 0 1 2 3 4 5

7. Rods/hooks might cause problems 0 1 2 3 4 5

8. Spine might not fuse properly 0 1 2 3 4 5

9. Deformity might recur or worsen 0 1 2 3 4 5

10. Risks of blood transfusion 0 1 2 3 4 5

11. Sensory changes or muscle weakness (permanent)

0 1 2 3 4 5

12. Paralysis (permanent) 0 1 2 3 4 5

13. Need for another operation 0 1 2 3 4 5

14. Other concerns: 0 1 2 3 4 5

Parents express many concerns regarding the adverse effects and risks of scoliosis surgery.

Before surgery, how concerned were you about any of these adverse outcomes for your child? *Before surgery, how concerned was your child* about any of these adverse outcomes? Not concerned(0); Hardly concerned(1); Slightly concerned(2); Somewhat concerned(3); Very concerned(4);

Extremely concerned(5); Don’t know(DK) Please circle the number/response that best applies.

VIA. Parents’ concerns regarding scoliosis surgery: magnitude of concern

238

Not a Extremely Very Very Extremely Don’t

Concern Unlikely Unlikely Unlikely Possible Likely Likely Likely Remember Likelihood of short term problems & risks 0 1 2 3 4 5 6 7 DR

1. Pain after surgery 0 1 2 3 4 5 6 7 DR

2. Unpleasant scar 0 1 2 3 4 5 6 7 DR

3. Back stiffness 0 1 2 3 4 5 6 7 DR

4. Restricted physical activities 0 1 2 3 4 5 6 7 DR

5. Infection (early) 0 1 2 3 4 5 6 7 DR

6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5 6 7 DR

7. Loss of privacy and independence 0 1 2 3 4 5 6 7 DR

8. Risks of blood transfusion 0 1 2 3 4 5 6 7 DR

9. Sensory changes or muscle weakness (short term)

0 1 2 3 4 5 6 7 DR

10. Paralysis (temporary) 0 1 2 3 4 5 6 7 DR

11. Death 0 1 2 3 4 5 6 7 DR

12. Other concerns: 0 1 2 3 4 5 6 7 DR

Likelihood of long term risks (1 year after surgery to rest of your life)

1. Back pain in the future 0 1 2 3 4 5 6 7 DR

2. Unpleasant scar 0 1 2 3 4 5 6 7 DR

3. Partial or unsatisfactory correction 0 1 2 3 4 5 6 7 DR

4. Back stiffness (lacking flexibility) 0 1 2 3 4 5 6 7 DR

5. Restricted physical activities 0 1 2 3 4 5 6 7 DR

6. Infection (late) 0 1 2 3 4 5 6 7 DR

7. Rods/hooks might cause problems 0 1 2 3 4 5 6 7 DR

8. Spine might not fuse properly 0 1 2 3 4 5 6 7 DR

9. Deformity might recur or worsen 0 1 2 3 4 5 6 7 DR

10. Risks of blood transfusion 0 1 2 3 4 5 6 7 DR

11. Sensory changes or muscle weakness (permanent)

0 1 2 3 4 5 6 7 DR

12. Paralysis (permanent) 0 1 2 3 4 5 6 7 DR

13. Need for another operation 0 1 2 3 4 5 6 7 DR

14. Other concerns: 0 1 2 3 4 5 6 7 DR

Parents express many concerns regarding the adverse effects and risks of scoliosis surgery.

Before surgery, how likely did you think that any of these adverse outcomes were, for your child? Never(0); Extremely unlikely:<1%(1); Very unlikely:1%-5%(2); Unlikely:5%-25%(3); Possible: 25%-50%(4);

Likely:50%-75%(5); Very likely:75%-95%(6); Extremely likely:95%-100%(7);Don’t Remember(DR)

Please circle the number/response that best applies.

VIB. Parents’ concerns regarding scoliosis surgery: likelihood of risks

239

Much Moderately Slightly No Slightly Much Completely As a result of surgery, Worse Worse Worse Change Better Better Better our child’s _______________ is now: -3 -2 -1 0 +1 +2 +3 1. Physical appearance -3 -2 -1 0 +1 +2 +3

i. Curve of the back -3 -2 -1 0 +1 +2 +3

ii. Prominence of ribs or bump in the back -3 -2 -1 0 +1 +2 +3

iii. Level of shoulders -3 -2 -1 0 +1 +2 +3

iv. Shoulder blade symmetry -3 -2 -1 0 +1 +2 +3

iv. Chest/breast asymmetry -3 -2 -1 0 +1 +2 +3

v. Balanced waistline or “hips” -3 -2 -1 0 +1 +2 +3

vi. Leaning of the body to one side -3 -2 -1 0 +1 +2 +3

vii. Height -3 -2 -1 0 +1 +2 +3

viii. Other aspects: -3 -2 -1 0 +1 +2 +3

2. Back pain -3 -2 -1 0 +1 +2 +3

3. Level of physical activity -3 -2 -1 0 +1 +2 +3

4. Participation in sports/recreation -3 -2 -1 0 +1 +2 +3

5. Brace wear -3 -2 -1 0 +1 +2 +3

6. Emotional/psychological well being -3 -2 -1 0 +1 +2 +3

7. Self-esteem -3 -2 -1 0 +1 +2 +3

8. Friendships/relationships -3 -2 -1 0 +1 +2 +3

As a result of surgery, our child’s Increased Increased Increased No Decreased Decreased Decreased risk of future problems has now: Severely A lot A little Change A little A lot Completely 1. Physical appearance worsening in the future -3 -2 -1 0 +1 +2 +3

2. Risk of future back pain -3 -2 -1 0 +1 +2 +3

3. Restriction of future physical activity -3 -2 -1 0 +1 +2 +3

4. Restriction of future participation in sports -3 -2 -1 0 +1 +2 +3

5. Future emotional/psychological problems -3 -2 -1 0 +1 +2 +3

6. Future problems with self-esteem -3 -2 -1 0 +1 +2 +3

7. Problems with future relationships/marriage -3 -2 -1 0 +1 +2 +3

8. Problems with pregnancy/childbirth -3 -2 -1 0 +1 +2 +3

9. Problems with sexual function -3 -2 -1 0 +1 +2 +3

10. Problems with employment/career opportunities

-3 -2 -1 0 +1 +2 +3

11. Future lung and heart problems -3 -2 -1 0 +1 +2 +3

12. Problems with general health -3 -2 -1 0 +1 +2 +3

13. Risk of shorter life span (early mortality) -3 -2 -1 0 +1 +2 +3

VIIA. Results of surgery: magnitude of change from parents’ perspective

As a result of surgery, how much change has your child experienced for each characteristic listed? Much Worse (-3); Moderately worse(-2); Slightly worse (-1); No change (0); Slightly better(+1); Much better(+2); Completely better(+3) Please circle the number/response that best applies.

How much, do you believe, has surgery reduced the risk of future problems for your child? Increased risk severely(-3); Increased list a lot(-2); Increased risk a little(-1); No change in risk(0); Decreased risk a little (+1); Decreased risk a lot (+2); Eliminated risk completely (+3)

240

Neither dissatisfied

Very Moderately Slightly nor Slightly Moderately Very As a result of our child’s surgery, Dissatisfied Dissatisfied Dissatisfied Satisfied Satisfied Satisfied Satisfied we are _____________ with our child’s: -3 -2 -1 0 +1 +2 +3 1. Physical appearance -3 -2 -1 0 +1 +2 +3

i. Straightened or decreased curve of the back -3 -2 -1 0 +1 +2 +3

ii. Decreased the prominence or bump in the back -3 -2 -1 0 +1 +2 +3

iii. Leveled shoulders -3 -2 -1 0 +1 +2 +3

iv. Corrected shoulder blade asymmetry -3 -2 -1 0 +1 +2 +3

iv. Corrected the chest/breast asymmetry -3 -2 -1 0 +1 +2 +3

v. Balanced the waistline or “hips” -3 -2 -1 0 +1 +2 +3

vi. Corrected the leaning of the body to one side -3 -2 -1 0 +1 +2 +3

vii. Increased height -3 -2 -1 0 +1 +2 +3

viii. Other aspects: -3 -2 -1 0 +1 +2 +3

2. Back pain -3 -2 -1 0 +1 +2 +3

3. Level of physical activity -3 -2 -1 0 +1 +2 +3

4. Participation in sports/recreation -3 -2 -1 0 +1 +2 +3

5. Brace wear -3 -2 -1 0 +1 +2 +3

6. Emotional/psychological well being -3 -2 -1 0 +1 +2 +3

7. Self-esteem -3 -2 -1 0 +1 +2 +3

8. Friendships/relationships -3 -2 -1 0 +1 +2 +3

Neither dissatisfied

Very Moderately Slightly nor Slightly Moderately Very As a result of our child’s surgery, we are _______Dissatisfied Dissatisfied Dissatisfied Satisfied Satisfied Satisfied Satisfiedwith the reduction of risk for future problem: -3 -2 -1 0 +1 +2 +3 1. Physical appearance worsening in the future -3 -2 -1 0 +1 +2 +3

2. Future back pain -3 -2 -1 0 +1 +2 +3

3. Restriction of future physical activity -3 -2 -1 0 +1 +2 +3

4. Restriction of future participation in sports -3 -2 -1 0 +1 +2 +3

5. Future emotional/psychological problems -3 -2 -1 0 +1 +2 +3

6. Future problems with self-esteem -3 -2 -1 0 +1 +2 +3

7. Problems with future relationships/marriage -3 -2 -1 0 +1 +2 +3

8. Problems with pregnancy/childbirth -3 -2 -1 0 +1 +2 +3

9. Problems with sexual function -3 -2 -1 0 +1 +2 +3

10. Problems with employment/career opportunities

-3 -2 -1 0 +1 +2 +3

11. Future lung and heart problems -3 -2 -1 0 +1 +2 +3

12. Problems with general health -3 -2 -1 0 +1 +2 +3

13. Shorter life span (early mortality) -3 -2 -1 0 +1 +2 +3

VIIB. Satisfaction with results: Parents’ perspective

How satisfied are you with effects of surgery on each of the following issues for your child? Very dissatisfied (-3); Moderately dissatisfied (-2); Slightly dissatisfied(-1); Neither dissatisfied nor satisfied(0);Slightly satisfied (+1); Moderately dissatisfied(+2); Very dissatisfied (+3) Please circle the number/response that best applies.

241

1. 2. 3. 4. 5. 6. 7. 8. 9. 10.

THANK YOU VERY MUCH FOR YOUR TIME AND PATIENCE COMPLETING THIS SURVEY !

VIII. Outcomes of surgery: any surprises.

What, if any, surprises or unexpected events has your child or you experienced following surgery?

Please list both pleasant and unpleasant surprises that your child or you have experienced.

242

Investigators:

Unni G. Narayanan, MD

Douglas M. Hedden, MD, FRCSC

Benjamin Alman, MD, FRCSC

Andrew Howard, MD, MSc, FRCSC

James G. Wright, MD, MPH, FRCSC

The Hospital for Sick Children Division of Orthopaedics

555 University Avenue, S-107 Toronto, Ontario

M5R 1N4 Canada

Priorities, goals & expectations of surgery for

adolescent idiopathic scoliosis: A survey of Canadian surgeons

243

What is this survey about? We are interested in your views on the impact of adolescent idiopathic scoliosis on your

patients, your perspective on the natural history of this condition, your typical goals for surgery

and your estimation of the likelihood of certain desirable and adverse outcomes from the

surgical treatment of adolescent idiopathic scoliosis.

Your Involvement We would appreciate your efforts in completing this survey. It involves some basic demographic

information and six primary questions, each with individual items for your consideration. Please

indicate your responses by circling the number or response that best applies from your perspective.

Confidentiality Your answers are strictly confidential. Your identity and that of your institution will not be

revealed in any results, and the aggregate analyses will be conducted blind to these data.

Who can you contact for more information? If you have any questions, concerns or suggestions please contact Unni Narayanan at (416)

813-6432 or by e-mail at unni.narayanan@sickkids.ca

Information about survey

244 Name of Surgeon (optional): Name of Institution (optional): Address (optional): Please provide location of practice: City: State/Province: Zip/Postal Code (optional) Country:

Training Background (Check all that apply) Spine fellowship Pediatric Orthopaedic fellowship Other

Type of practice of Primary appointment (Check all that apply) Teaching Residents Teaching Fellows No-teaching University hospital/affiliation Children’s hospital Community hospital

Member of SRS (Check one) Active Associate Candidate Emeritus Honorary International Non-member

Years in practice (Check one) Less than 5 years

5 to 10 years

10 to 15 years

15 to 20 years

> 20 years

Retired

Adolescent idiopathic scoliosis constitutes % of my surgical practice. < 10% 10% to 25% 25% to 50% 50% to 75% > 75%

Demographic Information

245

Extremely Very Very Extremely Don’t

Left untreated, the likelihood that Never Unlikely Unlikely Unlikely Possible Likely Likely Likely Know

scoliosis might be associated with the (< 1%) (1%-5%) (5%-25%) (25%-50%) (50%-75%) (75%-95%) (>95%)

following problems for my patients: 0 1 2 3 4 5 6 7 DK

1. Affect current physical appearance 0 1 2 3 4 5 6 7 DK

2. Affect future physical appearance 0 1 2 3 4 5 6 7 DK

3. Cause current back pain 0 1 2 3 4 5 6 7 DK

4. Cause back pain in future 0 1 2 3 4 5 6 7 DK

5. Limit current physical activities 0 1 2 3 4 5 6 7 DK

6. Limit future physical activities 0 1 2 3 4 5 6 7 DK

7. Limit current participation in sports/recreation

0 1 2 3 4 5 6 7 DK

8. Limit future participation in sports/recreation

0 1 2 3 4 5 6 7 DK

9. Create current emotional and/or psychological problems

0 1 2 3 4 5 6 7 DK

10. Create future emotional and/or psychological problems

0 1 2 3 4 5 6 7 DK

11. Affect current self esteem 0 1 2 3 4 5 6 7 DK

12. Affect future self esteem 0 1 2 3 4 5 6 7 DK

13. Affect current friendships/relationships

0 1 2 3 4 5 6 7 DK

14. Affect future relationships/marriage

0 1 2 3 4 5 6 7 DK

15. Affect pregnancy/ childbirth 0 1 2 3 4 5 6 7 DK

16. Affect sexual function 0 1 2 3 4 5 6 7 DK

17. Affect employment and/or career 0 1 2 3 4 5 6 7 DK

18. Cause lung and heart problems 0 1 2 3 4 5 6 7 DK

19. Affect general health in future 0 1 2 3 4 5 6 7 DK

20. Decrease life span (early mortality) 0 1 2 3 4 5 6 7 DK

21. Other problems: 0 1 2 3 4 5 6 7 DK

22. Other problems: 0 1 2 3 4 5 6 7 DK

I. Natural history of untreated adolescent idiopathic scoliosis: Likelihood of problems

Consider a typical patient with adolescent idiopathic scoliosis, who has met your criteria for recommending surgery. Without surgery, what do you think is the likelihood that adolescent idiopathic scoliosis would be associated with each of the current or future problems listed below, for such a patient. Please circle the response that applies best.

246

Very Very

Never Rarely Rarely Sometimes Often Often Always

My goals of surgery: 0 1 2 3 4 5 6

1. To improve current physical appearance 0 1 2 3 4 5 6

2. To prevent worsening of physical appearance 0 1 2 3 4 5 6

3. To decrease current back pain 0 1 2 3 4 5 6

4. To prevent future back pain 0 1 2 3 4 5 6

5. To improve current physical activity 0 1 2 3 4 5 6

6. To prevent restriction of future physical activity

0 1 2 3 4 5 6

7. To improve current participation in sports 0 1 2 3 4 5 6

8. To prevent restriction of future participation in sports/recreation

0 1 2 3 4 5 6

9. To stop/eliminate need for wearing a brace 0 1 2 3 4 5 6

10. To improve current emotional well being 0 1 2 3 4 5 6

11. To prevent future emotional and/or psychological problems

0 1 2 3 4 5 6

12. To improve self-esteem 0 1 2 3 4 5 6

13. To prevent loss of self esteem in the future

0 1 2 3 4 5 6

14. To improve current friendships and/or relationships

0 1 2 3 4 5 6

15. To prevent problems with future relationships and/or marriage

0 1 2 3 4 5 6

16. To prevent problems with pregnancy and/or childbirth

0 1 2 3 4 5 6

17. To prevent problems with sexual function 0 1 2 3 4 5 6

18. To improve employment and/or career opportunities

0 1 2 3 4 5 6

19. To prevent future lung and heart problems 0 1 2 3 4 5 6

20. To prevent future general health problems 0 1 2 3 4 5 6

21. To prevent early mortality 0 1 2 3 4 5 6

22. Other goal: 0 1 2 3 4 5 6

23. Other goal: 0 1 2 3 4 5 6

II. Goals of surgery

Patients with adolescents idiopathic scoliosis and their parents express a variety of reasons for why they undertake surgery. In your experience, how often is each of the following reasons among your goals of surgery?

Please circle the response that applies best.

247

My goals of surgery: Ranking ( 1 to ----- )

1. To improve current physical appearance

2. To prevent worsening of physical appearance

3. To decrease current back pain

4. To prevent future back pain

5. To improve current physical activity

6. To prevent restriction of future physical activity

7. To improve current participation in sports

8. To prevent restriction of future participation in sports/recreation

9. To eliminate brace wear

10. To improve current emotional well being

11. To prevent future emotional and/or psychological problems

12. To improve current self-esteem

13. To prevent future loss of self esteem

14. To improve current friendships and/or relationships

15. To prevent problems with future relationships and/or marriage

16. To prevent problems with pregnancy and/or childbirth

17. To prevent problems with sexual function

18. To improve employment and/or career opportunities

19. To prevent future lung and heart problems

20. To prevent future general health problems

21. To prevent early mortality

22. Other goal:

23. Other goal:

III. Ranking the goals of surgery

From the list below, rank the reasons (1 being highest) for recommending surgery from the most important to least important reason, from your perspective. You may rank as many (or as few) as you deem appropriate.

248

Extremely Very Very Extremely Don’t

Never Unlikely Unlikely Unlikely Possible Likely Likely Likely Know (< 1%) (1%-5%) (5%-25%) (25%-50%) (50%-75%) (75%-95%) (>95%) Likelihood of outcomes from surgery: 0 1 2 3 4 5 6 7 DK

1. Improvement of current physical appearance

0 1 2 3 4 5 6 7 DK

2. Prevention of worse of physical appearance

0 1 2 3 4 5 6 7 DK

3. Reduction of current back pain 0 1 2 3 4 5 6 7 DK

4. Prevention of future back pain 0 1 2 3 4 5 6 7 DK

5. Improvement of current physical activity

0 1 2 3 4 5 6 7 DK

6. Prevention of future physical activity restriction

0 1 2 3 4 5 6 7 DK

7. Improvement in current participation in sports

0 1 2 3 4 5 6 7 DK

8. Prevention of future restriction in sports participation

0 1 2 3 4 5 6 7 DK

9. Prevention of brace wear 0 1 2 3 4 5 6 7 DK

10. Improvement in current emotional and/or psychological well being

0 1 2 3 4 5 6 7 DK

11. Prevention of future emotional and/or psychological problems

0 1 2 3 4 5 6 7 DK

12. Improvement of self-esteem 0 1 2 3 4 5 6 7 DK

13. Prevention of future loss of self esteem

0 1 2 3 4 5 6 7 DK

14. Improvement of current friendships and/or relationships

0 1 2 3 4 5 6 7 DK

15. Prevention of problems with future relationships and/or marriage

0 1 2 3 4 5 6 7 DK

16. Prevention of problems with pregnancy and/or childbirth

0 1 2 3 4 5 6 7 DK

17. Prevention of problems with sexual function

0 1 2 3 4 5 6 7 DK

18. Improvement in employment and/or career opportunities

0 1 2 3 4 5 6 7 DK

19. Prevention of future lung and heart problems

0 1 2 3 4 5 6 7 DK

20. Prevention of future general health problems

0 1 2 3 4 5 6 7 DK

21. Prevention of early mortality 0 1 2 3 4 5 6 7 DK

22. Other outcome: 0 1 2 3 4 5 6 7 DK

23. Other outcome: 0 1 2 3 4 5 6 7 DK

IV. Expected outcomes of surgery: likelihood of results

Patients with adolescent idiopathic scoliosis, and their parents have a variety of expectations of surgery.

In your experience, what do you believe is the likelihood that surgery will satisfactorily accomplish each of these goals for your typical patient?

Please circle the response that applies best.

249

Extremely Very Very Extremely Don’t

Likelihood of short term problems & risks Never Unlikely Unlikely Unlikely Possible Likely Likely Likely Know (up to 3 months after surgery) (< 1%) (1%-5%) (5%-25%) (25%-50%) (50%-75%) (75%-95%) (>95%) 0 1 2 3 4 5 6 7 DK

1. Pain after surgery 0 1 2 3 4 5 6 7 DK

2. Unpleasant scar 0 1 2 3 4 5 6 7 DK

3. Back stiffness 0 1 2 3 4 5 6 7 DK

4. Restricted physical activities 0 1 2 3 4 5 6 7 DK

5. Infection (early) 0 1 2 3 4 5 6 7 DK

6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5 6 7 DK

7. Loss of privacy and independence 0 1 2 3 4 5 6 7 DK

8. Complications of blood transfusion 0 1 2 3 4 5 6 7 DK

9. Sensory changes or muscle weakness (short term)

0 1 2 3 4 5 6 7 DK

10. Paralysis (temporary) 0 1 2 3 4 5 6 7 DK

11. Death 0 1 2 3 4 5 6 7 DK

12. Other concerns: 0 1 2 3 4 5 6 7 DK

Likelihood of long term risks (2 years after surgery to the rest of your patients’ life)

1. Back pain in the future 0 1 2 3 4 5 6 7 DK

2. Unpleasant scar 0 1 2 3 4 5 6 7 DK

3. Partial or unsatisfactory correction 0 1 2 3 4 5 6 7 DK

4. Back stiffness (lacking flexibility) 0 1 2 3 4 5 6 7 DK

5. Restricted physical activities 0 1 2 3 4 5 6 7 DK

6. Infection (late) 0 1 2 3 4 5 6 7 DK

7. Rods might break or cause problems 0 1 2 3 4 5 6 7 DK

8. Spine might not fuse properly 0 1 2 3 4 5 6 7 DK

9. Deformity might recur or worsen 0 1 2 3 4 5 6 7 DK

10. Complications of blood transfusion 0 1 2 3 4 5 6 7 DK

11. Sensory changes or muscle weakness (permanent)

0 1 2 3 4 5 6 7 DK

12. Paralysis (permanent) 0 1 2 3 4 5 6 7 DK

13. Need for another operation 0 1 2 3 4 5 6 7 DK

14. Other concerns: 0 1 2 3 4 5 6 7 DK

Patients with adolescent idiopathic scoliosis and their parents express a number of concerns regarding the adverse effects and possible risks associated with the surgery for scoliosis. From your experience, what is the likelihood of these adverse events and risks for your typical patient? Please circle the response that applies best.

V. Likelihood of the risks and adverse effects of scoliosis surgery

250

As a result of my daughter’s Not at all Hardly Slightly Somewhat Very Extremely … my Son’s

scoliosis I would be _________ Concerned Concerned Concerned Concerned Concerned Concerned scoliosis

about her: 0 1 2 3 4 5 (0 to 5)

1. Physical appearance at the time 0 1 2 3 4 5

2. Physical appearance in the future 0 1 2 3 4 5

3. Back pain at the time 0 1 2 3 4 5

4. Risk of back pain in the future 0 1 2 3 4 5

5. Physical activity at the time 0 1 2 3 4 5

6. Future physical activity 0 1 2 3 4 5

7. Sports/recreation at the time 0 1 2 3 4 5

8. Future sports/recreation 0 1 2 3 4 5

9. Having to wear a brace 0 1 2 3 4 5

10. Emotional/psychological well being 0 1 2 3 4 5

11. Future emotional/psychological well being

0 1 2 3 4 5

12. Self-esteem at the time 0 1 2 3 4 5

13. Self esteem in the future 0 1 2 3 4 5

14. Friendships/relationships at the time

0 1 2 3 4 5

15. Future relationships/marriage 0 1 2 3 4 5

16. Pregnancy/childbirth 0 1 2 3 4 5 N/A

17. Sexual function 0 1 2 3 4 5

18. Employment/career 0 1 2 3 4 5

19. Risk of future lung and heart problems

0 1 2 3 4 5

20. Future general health problems 0 1 2 3 4 5

21. Having a shorter life 0 1 2 3 4 5

22. Other issue: 0 1 2 3 4 5

23. Other issue: 0 1 2 3 4 5

THANK YOU VERY MUCH FOR COMPLETING THIS SURVEY!

Given your knowledge of adolescent idiopathic scoliosis and its natural history, how concerned would you be (as a parent) with each of the following issues, if your child had adolescent idiopathic scoliosis that met your criteria for surgical intervention? Please circle the response that would apply to your hypothetical daughter. In the extreme right column write

down the corresponding response that would apply for a hypothetical son with the same criteria.

VI. Concerns regarding adolescent idiopathic scoliosis