assessment of cancer care and satisfaction€¦ · progress towards developing improved cancer...

Wisconsin’sComprehensive Cancer Control ProgramPrevention • Screening & Detection • Treatment • Quality of Life • Palliative Care

A C C E S SAssessment of

Cancer Care and Satisfaction

Wisconsin’s Survey of Cancer Treatment, Barriers to Care,

and Patient Satisfaction

Summary of Results October 2008

Summary Results – October 2008

3

ACCESS: Assessment of Cancer Care and Satisfaction Summary of Results

This publication was prepared by:

Amy Trentham-Dietz, PhD

Matthew C. Walsh, MPH

Paul P. Carbone Comprehensive Cancer Center

University of Wisconsin

610 Walnut St, WARF Building Room 307

Madison, WI 53726

Fax: 608-265-5330

Suggested citation for this report:

Trentham-Dietz A, Walsh MC. ACCESS: Assessment of Cancer Care and Satisfaction. Summary of Results. Madison, WI:

University of Wisconsin Paul P. Carbone Comprehensive Cancer Center, 2008.

Copyright information:

All material in this report is in the public domain and may be reproduced or copied without permission; citation as to

source, however, is appreciated.

ACCESS: Assessment of Cancer Care and Satisfaction

4

ACknowlEdgEmEntSThe ACCESS study was supported through funds provided by the UW Paul P. Carbone Comprehensive Cancer Center,

the Wisconsin Division of Public Health, and the Wisconsin Partnership Fund for a Healthy Future. This study was

designed by a multidisciplinary group of health care providers, researchers, advocates, and public health practitioners

committed to reducing the burden of cancer in Wisconsin. We are grateful for the contributions of the following

individuals and institutions:

Affinity Health System

Morgan Barrett, MD

Gundersen Lutheran Hospitals & Clinics

Kurt Oettel, MD

Marshfield Clinic

Douglas Reding, MD, FACP, MPH

Medical College of Wisconsin

Bruce Campbell, MD, FACS

B. Alex Matthews, PhD

Patient Advocate

Sue Joy-Sobota

St. Joseph’s Regional Medical Center

Ione Miedema, RN

University of Wisconsin Paul P. Carbone

Comprehensive Cancer Center

Mary Baliker

James Cleary, MD

Amy Conlon, MPH

Nancy Freeman, CHES

Martha Gaines, JD, LLM

John Hampton, MS

Sara Karon, PhD

Stephanie Kaufman, MS

Julie McGregor

Patrick Remington, MD, MPH

Jeanne Strickland, MA

Amy Trentham-Dietz, PhD

Matthew Walsh, MPH

Wheaton Franciscan Healthcare

Cathy Pawlak

Wisconsin Department of Health Services

Mary Foote, MS

Laura Stephenson

Mark Wegner, MD, MPH


5

tAblE of ContEntS Acknowledgements . . . . . . . . . . . . . . . . . . . . . .4

Table of Contents . . . . . . . . . . . . . . . . . . . . . . . .5

Executive Summary . . . . . . . . . . . . . . . . . . . . . .6

Tables . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7

Figures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8

Introduction and Background . . . . . . . . . . . . .9

Primary Objectives . . . . . . . . . . . . . . . . . . . . 10

Methods

Case Identification . . . . . . . . . . . . . . . . . . 10

Data Collection . . . . . . . . . . . . . . . . . . . . . .11

Project Timeline . . . . . . . . . . . . . . . . . . . . .11

Chapter One

Treatment Options and Barriers to Care . . 12

Chapter Two

Patient Satisfaction with Cancer Care . . . 20

Chapter Three

Total Symptom Management

and Quality of Life . . . . . . . . . . . . . . . . . . . . .24

References. . . . . . . . . . . . . . . . . . . . . . . . . . . . 30


6

ExECutivE SummARyThe Assessment of Cancer Care and Satisfaction (ACCESS) study was initiated to address the priorities identified in

Wisconsin’s Comprehensive Cancer Control Plan for 2005-2010. A total of 1,839 cancer patients participated in the

ACCESS study during 2006-2007. All study participants were Wisconsin residents diagnosed with breast, colorectal,

lung or prostate cancer in 2004. Results addressing the primary study objectives are summarized here:

• About 8% of study participants reported receiving cancer treatment as part of a clinical trial. Most participants

(64%) reported that they were not told about clinical trials as an option to receive treatment for their cancer.

Progress towards developing improved cancer therapies could likely accelerate if cancer patients could be more

effectively recruited to participate in cancer clinical trials.

• About 4% of participants reported difficulties with health insurance for cancer treatment, including a lack of adequate

insurance or refusal by an insurance company to provide coverage. This percentage varied greatly between cancer

patients with greater education or income (<1%) compared to patients with less education or income (5-9%). Health

literacy barriers were reported by substantial proportions of cancer patients — 2 to 47% depending on socioeconomic

status — and call for innovative solutions, such as patient navigator programs, to address these disparities.

• The majority of study participants reported their satisfaction with cancer care as good or excellent. Satisfaction was

greatest among patients: who participated in shared treatment decisions with the medical staff; whose family was

included in treatment decision making; who encountered fewer travel, insurance, and literacy barriers to receiving

cancer care; who did not experience unexpected side effects of treatment; and whose worries and fears were

addressed by the treatment staff. Most factors related to lower satisfaction with cancer care identified by study

participants are modifiable, offering several avenues to improve the cancer treatment experience.

• Even though side effects of cancer therapy were commonly reported by study participants, less than half of

participants were able to obtain adequate relief. Two aspects of symptom management — coordinating care and

addressing patient worries and fears — were more likely to occur if the patient did not experience difficulties related

to health insurance, literacy, and shared decision making. Patients with lower household income, less education,

non-white race, and older age were less likely to report that their worries and fears were addressed by the treatment

staff. Both mental health and physical health are impacted by a cancer diagnosis, so high quality care must treat the

complete patient.

This report provides a provocative but initial summary of the ACCESS study data. More in-depth analyses will be

forthcoming. For more information, please contact Amy Trentham-Dietz, PhD, at 610 Walnut St, WARF Room 307,

Madison, WI 53726; tel 608-263-1946; email [email protected].


7

tAblESTable 1: ACCESS Study Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Table 2: Prevalence of self-reported cancer treatments for breast, colorectal,

lung and prostate cancer patients, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Table 3: Top 12 types of complementary and alternative therapies

reported by cancer patients, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Table 4: Distribution of physician specialties that were primarily responsible for

cancer patient care, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Table 5: Self-reported barriers to treatment for combined breast, colorectal, lung and

prostate cancer patients by education, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Table 6: Self-reported barriers to treatment for combined breast, colorectal, lung and

prostate cancer patients by annual household income, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Table 7: Self-reported barriers to treatment for breast, colorectal, lung and prostate

cancer patients by cancer site, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Table 8: Decision-making process by geographical location of cancer patients,

Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Table 9: Health literacy for combined breast, colorectal, lung and prostate cancer

patients by education, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18


patients by annual household income, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18


patients by cancer site, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

Table 12: Average number of information sources used to obtain information by

education, income, and type of cancer, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Table 13: Satisfaction with care for cancer patients by cancer type, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Table 14: Satisfaction with care according to the decision-making process for most

cancer treatments, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Table 15: Percent of cancer patients indicating low satisfaction with care for the 29

FACIT-TS-PS questions, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .22

Table 16: Satisfaction with care according to treatment barriers, care received,

and self-reported health, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .23

Table 17: Percent of respondents who reported that the treatment staff coordinated care

to manage symptoms according to other treatment-related characteristics, Wisconsin, 2004 . . . . . . . . . . . . . . .25

Table 18: Percent of respondents who reported that the treatment staff addressed their worries

and fears according to other treatment-related characteristics, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . .29


8

figuRESFigure 1: Estimated percentage and number of new cancer cases in Wisconsin, 2006 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9

Figure 2: Specialties of physicians consulted for cancer-related issues including treatment,

relief of symptoms, and follow-up by cancer site, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Figure 3: Percent of patients involved in clinical trials by cancer type, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Figure 4: Reasons given for not receiving treatment in a clinical trial (CT), Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . 15

Figure 5: Variations in treatments and transportation barriers by

geographic location in Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Figure 6: Top eight sources used to obtain information and influence

treatment decisions, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Figure 7: Reported symptoms by the top three reported treatment modalities

for breast cancer, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26

Figure 8: Reported symptoms by the top three reported treatment modalities for

colorectal cancer, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26


lung cancer, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26


prostate cancer, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26

Figure 11: Symptom management: Among those that reported having symptoms,

the percent of patients that informed their treatment staff, got help from their

treatment staff, and got adequate relief of symptoms, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27

Figure 12: Percent of respondents reporting that their worries and fears were addressed

by the treatment staff according to income, educational attainment, race, and

age, Wisconsin, 2004 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .28


9

intRoduCtion And bACkgRoundAttention is increasingly being paid to the assessment of patient satisfaction with medical care. Satisfaction with care

has been shown to be associated with health-related quality of life and psychosocial function among cancer patients.[1,

2] According to one study, a minority of cancer patients are satisfied with the provision of information concerning their

disease, treatment, and symptom control.[2] Health care providers face considerable challenges to address the complex

issues surrounding cancer patients. Relatively little information is available to indicate the extent to which cancer

patients are satisfied with the quality of care they receive.

In 2005, a steering committee of 37 individuals representing over 100 public, private, for- and non-profit, local and

statewide organizations jointly developed the Wisconsin Comprehensive Cancer Control Plan 2005-2010.[3]

This five-year plan describes integrated and coordinated approaches to reducing cancer incidence, morbidity and

mortality through prevention, early detection, treatment, and palliation. The plan highlights the need to assemble

data on the economic, geographic, and cultural barriers in accessing treatment as well as the information concerning

quality of life. The plan also identified as a priority the need to increase participation in cancer clinical trials.

The Assessment of Cancer CarE and SatiSfaction (ACCESS) study formed one activity of the implementation of the

Wisconsin Comprehensive Cancer Control Plan. The ACCESS study was jointly supported by the UW Paul P Carbone

Comprehensive Cancer Center, the Wisconsin Division of Public Health, and the Wisconsin Partnership Fund for a

Healthy Future. The overall purpose of this study was to assess cancer patients’ experiences of their care, particularly

with regard to satisfaction with care.

Participants in the ACCESS study were

Wisconsin residents diagnosed with

breast, colorectal, lung, and prostate

cancer in 2004. These four cancer

types constitute 55% of all cancers that

are diagnosed in Wisconsin each year

(figure 1). One purpose of the ACCESS

study was to develop long-term data

measurement parameters for the

comprehensive cancer control planning

efforts and to ultimately support

improvements in the cancer care

patients receive in Wisconsin.

The ACCESS study results will serve as

pilot data for future research into the

determinants of quality of cancer care.

Figure 1: Estimated percentage and number of new cancer cases in wisconsin, 2006


10

PRimARy objECtivES Using the Wisconsin Comprehensive Cancer Control Plan 2005-2010 as a guide, an ACCESS planning committee

designed the ACCESS study to address the following objectives:

1. Determine the treatment options that were recommended to and used by cancer patients as well as

barriers to receiving treatments.

A Determine whether patients were offered participation in clinical trials.

B Determine whether patients encountered barriers (age, race, cost, insurance, and distance) to treatment.

2. Measure patient satisfaction regarding:

A the cancer care they received, and

B the decision-making process surrounding cancer treatment.

3. Assess patient quality of life.

A Determine whether total symptom management was addressed during the course of care.

B Determine whether patients encountered barriers to achieving total symptom management.

mEthodS

CASe IDentIFICAtIon

Wisconsin residents aged 18-79 years, newly diagnosed in 2004 with invasive breast, colorectal, prostate, or lung cancers,

and reported to the Wisconsin Cancer Reporting System were eligible for the ACCESS study. The Wisconsin Cancer

Reporting System (WCRS) is housed in the Bureau of Health Information and Policy, Division of Public Health, Department

of Health Services. The WCRS was established in 1976 to collect cancer incidence data on Wisconsin residents as mandated

by chapter 255.04, Wisconsin Statutes. Eligibility was limited to case subjects with valid addresses who were living at

the time of first contact. Lung cancer case eligibility required a publicly available telephone number in addition to a valid

address. To increase minority representation in the sample, all non-white and/or Hispanic cancer patients diagnosed during

the study’s eligibility timeframe were approached for participation. A random sample of non-Hispanic white patients was

selected from the WCRS database for the study based on cancer-specific survival rates and the target sample size. A total

of 2,715 patients were selected for the study and 1,839 (67.7%) completed the survey. Participation varied slightly across

case groups (table 1). Breast, prostate, and colorectal cancer respondents received the study survey by mail on average

21.4 months (range 16.7-28.0) after their cancer diagnosis. Lung cancer respondents received the study survey on average

26.4 months (range 23.2-31.9) after their cancer diagnosis. Family members of deceased lung cancer patients were asked

to complete an alternate questionnaire regarding the impact of the lung cancer patient’s diagnosis and death; results of

this parallel study will be described in a separate report.

table 1: ACCESS Study Participation

Breast Prostate Colorectal Lung total

Selected for participation 850 800 900 390 2,940

Deceased 6 5 19 35 65

Ineligible 14 8 32 106 160

Total eligible 830 787 849 249 2,715

Completed by mail (%) 561 (93%) 512 (92%) 500 (94%) 113 (73%) 1,685 (92%)

Completed by phone (%) 41 (7%) 43 (8%) 30 (6%) 41 (27%) 155 (8%)

Completed total 602 555 530 154 1,841

Response rate 72.5% 70.5% 62.4% 61.8% 67.8%


11

DAtA CoLLeCtIon

Subjects were approached for participation between May 2006 and April 2007. Mailed packets included a survey with

a cover letter, a study participant information sheet, and a book of U.S. postage stamps that served as an incentive

(value: $7.80). The cover letter and information sheet described the purpose of the study using language approved

by the Health Sciences Institutional Review Board of the University of Wisconsin-Madison. Mailings followed Dillman’s

total design method.[4] One week following the initial mailing, a postcard reminder was mailed to all subjects. At three

weeks, a cover letter, a second (identical) questionnaire, and study information sheet were sent to non-respondents and,

at five weeks, telephone calls were made to the remaining potential study participants. Trained interviewers offered

non-responders the opportunity to complete the survey over the telephone. Due to the poor prognosis after a cancer

diagnosis, lung cancer patients were approached with modified methods. Lung cancer patients were first mailed an

introductory letter without the survey. After one week, an interviewer called the patient to verify that the letter was

received. Upon verification that the patient was living, the survey and other study materials were mailed to the lung

cancer patients as described above. Of the 159 lung cancer patients that consented over the telephone to receive the

survey, 154 (97%) participated.

The study survey included questions regarding cancer treatments, perceived symptom management and coordination

of care, barriers to receiving care, comorbid health conditions, and demographic factors. The study survey also included

questions from the Functional Assessment of Cancer Therapy (FACT) quality of life measurement tool and the Functional

Assessment of Chronic Illness Therapy - Treatment Satisfaction - Patient Satisfaction (FACIT-TS-PS) instrument.[5]

The FACT quality of life measurement system contains a core set of 27 general health questions called FACT-G.[6]

Subscales for the FACT-G include a physical well-being scale, a social well-being scale, and a functional well-being scale,

each consisting of 7 questions, and an emotional well-being scale consisting of 6 questions. Each survey also included a

one-page set of cancer site-specific quality of life questions.[6-10] The FACIT-TS-PS includes a total of 32 questions

and 7 subscales addressing explanations (4 questions), interpersonal experiences (3 questions), comprehensive care

(7 questions), technical quality of care (3 questions), decision making (5 questions), nursing care (3 questions), and trust

(4 questions).[5] The FACIT-TS-PS ended with 3 questions regarding overall satisfaction. The ACCESS survey instrument

required 20-30 minutes to complete.

“Treatment staff” was defined in the survey to include doctors, nurses, medical assistants, and social workers.

“Cancer treatment” was defined for the respondents to include follow-up visits and conversations with medical staff

even if no therapy such as medication was prescribed.

PRoJeCt tIMeLIne

April 2005 Completion and publication of the Wisconsin Comprehensive Cancer Control Plan 2005-2010

July 2005 Draft protocol and study survey distributed to the planning team

February 2006 Institutional Review Board approval obtained

March 2006 Planning team conference call to discuss and approve the final survey instrument

May 2006 First wave of surveys mailed to breast, colorectal, and prostate cancer patients

August 2006 Final wave of surveys mailed to breast, colorectal, and prostate cancer patient

December 2006 First wave of lung cancer case surveys mailed

April 2007 Final wave of lung cancer case surveys mailed

July 2007 Survey data entry completed


12

ChAPtER onE treatment options and barriers to Care

oBJeCtIVe #1Determine the treatment options that were recommended to and used by

cancer patients as well as barriers to receiving treatments.

A. Determine whether patients were offered participation in clinical trials.

B. Determine whether patients encountered barriers

(age, race, cost, insurance, and distance) to treatment.

SUMMARy

According to Wisconsin’s Department of Health Services, almost 500,000 Wisconsin residents lack health insurance.[11]

Researchers across the United States have found that individuals without insurance receive fewer inpatient and outpatient

services and are less likely to receive treatment consistent with national guidelines.[12-14] To focus on potential insurance

difficulties in receiving adequate cancer care, respondents were asked if they had health insurance. Respondents also

recorded the types of insurance they had, if they encountered problems due to insufficient insurance, and if an insurance

company stopped providing coverage or refused to provide coverage after they were diagnosed with cancer.

In addition to a lack of adequate insurance as a major barrier to receiving medical care, travel issues may also affect

cancer care. Over 30% of Wisconsin residents live in rural areas and often experience restricted access to cancer care

services. Lack of transportation can affect a patient’s ability to obtain the proper treatment. Several questions were

included in the ACCESS survey to determine if respondents encountered barriers due to transportation difficulties.

To evaluate the extent to which Wisconsin patients encountered additional barriers to treatment, questions to assess

literacy difficulties, educational and income barriers, and age and race discrimination were included in the ACCESS

survey. Respondents were asked whether they felt that age or race restricted the treatment choices offered to them.

Urbanicity was defined using the 2006 NCHS urban-rural classification scheme for counties.[15]

In addition to the standard treatments (surgery, radiation, and chemotherapy), the survey requested information regarding

complementary and alternative medicines, the types of physicians consulted during cancer treatment, and information

sources used by patients to make medical decisions. ACCESS study results suggested that many cancer patients undergo

treatments in addition to surgery, radiation, and chemotherapy. These include complementary or alternative therapies as

well as treatments to prevent the recurrence of cancer. Data also indicate the importance of coordination of care as most

cancer patients reported seeing multiple physicians and specialists during the course of their cancer care.

An additional objective of the ACCESS study was to survey cancer patients regarding their participation in clinical

trials. According to the National Cancer Institute, only 3% of U.S. adults with cancer participate in clinical trials.[16]

It is estimated that 85% of cancer patients are unaware that treatment may be available through clinical trials. One

study by the National Cancer Cooperative Groups reported that among clinical trial participants, 77% said they would

recommend clinical trial participation to someone else with cancer. In the ACCESS survey, after a short paragraph

describing clinical trials, study participants were asked if they received treatments offered through a clinical trial.

Additional questions were used to explore the reasons why participants were unaware of clinical trials.

Patients involved with clinical trials were asked to identify who initiated their involvement.


13

Cancer Treatments

The prevalence of self-reported

cancer treatments for breast,

colorectal, lung and prostate

cancer patients is displayed in

table 2. Over 10% of respondents

reported using complementary

or alternative therapies and

35% reported actively receiving

treatment for cancer or for

prevention of recurrence at the

time of the survey.

Complementary and Alternative

Therapies

Of patients reporting the use of

complementary or alternative

therapies (N=183), 130 (71%) spoke

with a member of their treatment

staff about the use of these

alternative therapies.

A summary of the top 12 reported

types of complementary and

alternative therapies is provided

in table 3. Over 25% of cancer

patients integrated spiritual

healing/prayer and over 20%

reported incorporating dietary

supplements into their cancer

treatment. Most users of

complementary or alternative

therapies reported more than

one type of such therapy.

With a large number of respondents unaware of the potential to be involved

with a clinical trial, more communication between patients and their treatment

staff is needed to inform cancer patients of additional treatment options.

These results also indicate that greater attention should be paid to patient

health literacy and how health literacy affects a patient’s ability to obtain

information to inform decision making. Focusing on geographic location,

study results suggest that the percent of respondents reporting transportation

difficulties, involvement with randomized clinical trials, shared decision-making,

and patients receiving chemotherapy and radiation as part of their treatment

differ by region. Finally, while ACCESS participants did not report high levels

of barriers to cancer care, these levels did vary by patient education and

income categories.

table 2: Prevalence of self-reported cancer treatments for breast, colorectal, lung and prostate cancer patients, wisconsin, 2004

treatment

totalsn=1839

Breastn=602

Colorectaln=529

Lungn=153

Prostaten=555

Surgery 82.9% 98.8% 93.7% 59.5% 61.9%

Radiation 47.3% 72.3% 23.2% 53.0% 41.5%

Chemotherapy 39.8% 50.3% 54.8% 63.6% 7.6%

Complementary or Alternative Therapies

10.3% 16.7% 6.6% 8.0% 7.2%

Currently Receiving Treatment

34.4% 65.4% 19.5% 29.3% 16.5%

table 3: top 12 types of complementary and alternative therapies reported by cancer patients, wisconsin, 2004

type of therapynumber (n=183) Percent

Spiritual Healing/Prayer 47 26.0%

Vitamins/Supplements 40 22.1%

Massage 35 19.3%

Imagery/Visualization 23 12.7%

Relaxation/Positive Thinking 22 12.2%

Diet and Exercise 22 12.2%

Acupuncture 16 8.8%

Chiropractic 14 7.7%

Yoga 11 6.1%

Meditation 10 5.5%

Homeopathy 7 3.9%

Stress Reduction/Reiki 6 3.3%


14

Cancer Care Providers

Physician specialties consulted for

cancer-related issues by cancer

site are displayed in figure 2.

Breast cancer patients reported

consulting the greatest number

of physician specialties (4), on

average, than the other case

groups. On average, lung cancer

patients consulted 3 physician

specialties, colorectal cancer

patients reported 2 specialties,

and prostate cancer patients

reported 1 type of doctor.

Approximately 90% of all cancer

patients reported having one

doctor responsible for his/her

cancer care (table 4). For breast,

colorectal, and lung cancer

patients, this was most often

a medical oncologist. Among

prostate patients, 24% (n=133)

indicated that an urologist was

primarily responsible for his care.Figure 2: Specialties of physicians consulted for cancer-related issues including treatment, relief of symptoms, and follow-up by cancer site, wisconsin, 2004

table 4: distribution of physician specialties that were primarily responsible for cancer patient care, wisconsin, 2004

Responsible DoctorBreastn=602

Colorectaln=529

Lungn=153

Prostaten=555

One doctor responsible for cancer care

91.4% 89.8% 86.3% 90.1%

Medical oncologist 49.3% 42.8% 56.1% 6.2%

Surgeon 13.9% 18.5% 9.9% 13.6%

Surgical oncologist 9.2% 3.7% 7.6% 23.8%

Radiation oncologist 7.0% 5.2% 7.6% 7.6%

Primary care doctor, internist or family practice

2.6% 5.2% 9.1% 7.4%

Other or not specified 15.4% 20.8% 9.9% 39.5%


15

Clinical Trial Participation

A total of 126 patients (7.5%)

reported involvement with a

clinical trial (figure 3). Among the

cancer patients that reported no

participation in clinical trials, 219

(16%) reported that they were

not eligible for any clinical trials,

890 (64%) reported that they

were not told about any clinical

trials, 38 (3%) reported that they

did not have insurance coverage

for a clinical trial, and 202

(15%) reported deciding against

involvement (figure 4).

The top five reasons cited for

choosing not to participate in a

trial included feeling comfortable

with standard procedures (32%),

being afraid of the unknown (15%),

worrying about potential side

effects (13%), barriers such as

travel distance and cost (12%), and

confusion due to a rush to obtain

treatment (7%).

Among the patients that reported

involvement with clinical trials,

112 (89%) were asked by the

treatment staff to participate.

This varied little by cancer site.

Figure 3: Percent of patients involved in clinical trials by cancer type, wisconsin, 2004

Figure 4: Reasons given for not receiving treatment in a clinical trial (Ct), wisconsin, 2004


16

Barriers to Care

Barriers to treatment for cancer

were not widely reported. Lack

of health insurance at the time of

diagnosis was the most frequently

reported barrier. While the overall

percentage of patients that

encountered barriers to care was

low, patients with lower levels of

education and income were more

likely to report barriers to cancer

care (tables 5-6).

Age as a barrier was reported

most often by lung and prostate

cancer patients while not having

health insurance was reported

most often by colorectal cancer

patients (table 7).

The average travel time (one way)

reported by cancer patients to

the facility where most care was

received was 35 minutes with a

median travel time of 25 minutes.

Most patients (75%) reported

traveling less than 45 minutes.

A travel time over 90 minutes was

reported by 5% of respondents.

table 5: Self-reported barriers to treatment for combined breast, colorectal, lung and prostate cancer patients by education, wisconsin, 2004

Barrier to cancer treatment

Less than 12 yearsn=212

High Schooln=770

Some Collegen=401

College Degree or

Moren=416

No insurance 6.2% 4.6% 1.8% 0.4%

Insurance difficulties 3.4% 2.3% 0.9% 0.8%

Age 5.9% 1.3% 0.9% 0.5%

Travel issues 1.5% 1.8% 2.8% 0.7%

Race 0.5% 0.3% 0.3% 0.2%

table 6: Self-reported barriers to treatment for combined breast, colorectal, lung and prostate cancer patients by annual household income, wisconsin, 2004


< $15Kn=206

$15K - $29K

n=386

$30K - $49K

n=424

$50K - $99K

n=425 >$100Kn=170

No insurance 8.9% 5.0% 1.2% 1.4% 2.4%

Insurance difficulties 3.4% 2.3% 0.9% 0.8% 0.9%

Age 5.6% 4.8% 1.9% 3.3% 1.8%

Travel issues 4.6% 2.7% 1.0% 0.7% 1.8%

Race 0.5% 0.3% 0.5% 0.0% 0.0%

* 228 patients (12%) did not self-report income

table 7: Self-reported barriers to treatment for breast, colorectal, lung and prostate cancer patients by cancer site, wisconsin, 2004


All Patientsn=1839

Breastn=602

Colorectaln=529

Lungn=153

Prostaten=555

No insurance 4.0% 2.5% 5.5% 3.3% 4.2%

Insurance difficulties 3.1% 5.2% 2.0% 1.3% 2.4%

Age 3.6% 2.7% 2.2% 6.1% 5.1%

Travel issues 1.7% 2.2% 1.6% 2.7% 1.1%

Race 0.3% 0.2% 0.6% 0.7% 0.0%

–


17

Urbanicity

Overall, 1.7% of cancer patients

reported transportation difficulties

in accessing cancer care, but

this varied by county. Higher

percentages of patients from

Milwaukee and rural counties

reported transportation difficulties

than patients from other types of

counties (figure 5).

Respondents from Milwaukee

County also reported a lower

percentage of involvement

with clinical trials compared to

respondents from the rest of the

state (3.8% vs. 8.2%). However,

Milwaukee respondents were

most likely to report treatment

with chemotherapy and radiation

compared to patients in urban,

mixed, and rural counties (figure 5).

Shared-decision making was

reported less often in rural

counties (69%) and Milwaukee

County (62%) compared to

suburban/urban counties (72%)

and mixed urban/rural counties

(75%) (table 8).

Figure 5: variations in treatments and transportation barriers by geographic location in wisconsin, 2004

table 8: decision-making process by geographical location of cancer patients, wisconsin, 2004

Location

Patient’s treatment staff made most of the decisions

n=312

Patient made most of the decisions

n=194


with his/her treatment staff

n=1,250

Milwaukee County 23% 15% 62%

Suburban or Urban County

18% 11% 72%

Mixed County 16% 10% 75%

Rural County 18% 13% 69%


18

Health Literacy

About one-fifth of respondents

reported having difficulties reading

hospital materials and filling out

medical forms by themselves.

Many respondents also reported

having problems learning about

their cancer because of difficulty

understanding written information

and taking medications properly

(table 9).

Literacy difficulties appeared

strongly related to socio-economic

status (table 10). Over 40% of

respondents with less than a

high school diploma and 30% of

respondents in the lowest income

group reported difficulties. Even

12% of the highest socioeconomic

group reported difficulties with

reading hospital materials.

In general, breast and prostate

cancer patients reported fewer

literacy difficulties than lung and

colorectal cancer patients (table 11).

table 9: health literacy for combined breast, colorectal, lung and prostate cancer patients by education, wisconsin, 2004

Literacy Difficulty

< 12 yearsn=212

High Schooln=770

Some Collegen=401

College Degree or Moren=416

Reading hospital materials 41.9% 25.0% 17.4% 9.9%

Filling out medical forms 47.2% 21.7% 12.9% 7.2%

Understanding medical condition 30.5% 13.9% 7.2% 1.7%

Taking medications properly 14.3% 5.6% 5.4% 2.2%

table 10: health literacy for combined breast, colorectal, lung and prostate cancer patients by annual household income*, wisconsin, 2004

Literacy Difficulty< $15Kn=206

$15K - $29K

n=386

$30K - $49K

n=424

$50K - $99K

n=425 > $100Kn=170

Reading hospital materials 31.3% 26.2% 19.1% 14.9% 11.9%

Filling out medical forms 35.9% 28.0% 16.1% 10.1% 5.4%

Understanding medical condition 11.3% 8.0% 3.9% 2.9% 4.2%

Taking medications properly 25.4% 18.1% 9.0% 4.3% 3.0%

* 228 patients (12%) did not self-report income

table 11: health literacy for combined breast, colorectal, lung and prostate cancer patients by cancer site, wisconsin, 2004

Literacy Difficulty

All Patientsn=1,839

Breastn=602

Colorectaln=529

Lungn=153

Prostaten=555

Reading hospital materials

21.7% 17.4% 26.8% 30.1% 19.5%

Filling out medical forms

19.2% 14.0% 23.1% 25.3% 19.8%

Understanding medical condition

11.4% 7.7% 12.4% 19.3% 12.6%

Taking medications properly

5.9% 4.6% 6.8% 10.3% 5.4%

–


19

Information Sources

Respondents were asked to

indicate the information sources

they used to make decisions about

their cancer treatment. Over

85% of patients indicated that

the treatment staff influenced

treatment decisions, and 41% of

respondents indicated that family

members influenced treatment

decisions. Whereas approximately

30% of patients indicated that

they obtained information from

the internet and books, only 12%

indicated that those sources

influenced decisions about

treatment (figure 6).

Breast and prostate cancer

patients reported that more

information sources influenced

treatment decisions than

colorectal and lung cancer

patients. Patients with higher

education and income used more

sources of information to inform

treatment than patients with lower

education and income (table 12).

Figure 6: top eight sources used to obtain information and influence treatment decisions, wisconsin, 2004

table 12: Average number of information sources used to obtain information by education, income, and type of cancer, wisconsin, 2004

Demographic subgroupBreast n=602

Colorectal n=529

Lungn=153

Prostate n=555

All patients 3.1 1.8 1.9 2.7

Income

<$15,000 2.1 1.3 1.8 1.9

$15,000-$29,999 2.6 1.5 1.7 2.3

$30,000-$49,999 3.1 1.9 2.0 2.7

$50,000-$99,999 3.5 2.3 2.0 3.0

>$100,000 4.3 2.9 1.7 3.9

Education

Less than High School 1.7 1.5 2.2 2.0

High School 2.6 1.6 1.7 2.3

Some College 3.4 1.9 1.9 3.1

College Degree or More 4.2 2.7 2.1 3.5

Choices for sources of information: family member, friends/co-workers, books, support groups or other people with my type of cancer, foundations or non-profit organizations, insurance companies, doctors and the rest of the treatment staff, scientific research reports, the internet, or other.

–


20

ChAPtER two Patient Satisfaction with Cancer Care

oBJeCtIVe #2Measure patient satisfaction regarding:

A. The cancer care they received

B. The decision-making process surrounding cancer treatment

SUMMARy

Receiving the best possible medical care is the hope for the estimated 28,000 Wisconsin residents who will be diagnosed

with cancer this year. Defining and accessing optimal cancer care requires an evaluation of more than survival rates.

Numerous outcomes and indicators are used to measure the quality of cancer care. The ratio of nurses to patients, the

availability of clinical trials, and patient satisfaction are all potential measures of quality. Considerable demands are

placed on health care providers to address the complex issues that are faced by cancer patients. However, relatively

little information is available to indicate the extent to which

cancer patients are satisfied with the quality of care they

receive. Patient satisfaction refers to a patient’s feelings

about the care he or she receives and is generally measured

by patient surveys. Patients are the best source to evaluate

their interactions with medical personnel. Although

satisfaction ratings cannot always gauge whether the care

received was appropriate or technically sound, these ratings

assist health systems administrators to measure the impact

of new procedures and guide policy decisions.

In the ACCESS survey, satisfaction was measured by

the Functional Assessment for Chronic Illness Therapy

– Treatment Satisfaction – Patients Satisfaction survey

(FACIT-TS-PS). The FACIT-TS-PS includes 29 questions

divided into seven subscales. Respondents rated the

quality of health care services they received including

follow-up visits and conversations with medical staff, even

when no therapy was prescribed. Questionnaire items were

combined into an overall measure of satisfaction expressed

as a percentage (range, 0-100%), and categorized into

four categories. Excellent satisfaction was defined by

respondents awarding the highest level of satisfaction for

all subscales. Good satisfaction required 90%, and fair

required 50% of the potential maximum score. Poor was

defined as a satisfaction rating under 50%.


21

Overall Patient Satisfaction

Satisfaction with cancer care was evaluated for explanations by doctors, personal interactions with doctors, comprehensive care by the treatment staff, technical quality of the cancer care, decision making, satisfaction with nursing care, and trust of the treatment staff. Questionnaire items were combined into an overall measure of satisfaction and stratified into four categories (table 13). The majority of respondents described satisfaction with cancer care as excellent (30%) or good (41%) rather than fair (27%) or poor (3%).

Although few cancer patients rated their satisfaction with medical care as poor, this varied by the decision-making process. Only

1% of respondents who reported

they shared the decision-making

with the treatment staff rated

satisfaction as poor compared

with 12% who reported that the

treatment staff made most of the

decisions (table 14).

Respondents tended to report

greatest satisfaction with aspects

of care concerning trust and

technical quality, and to report

greater dissatisfaction with issues

related to comprehensive care and

decision making (table 15).

To evaluate the decision-making process surrounding cancer treatment

and how this process might relate to patient satisfaction, two questions

were included in the ACCESS survey. One question asked the respondents

to describe the decision-making process used for most of their cancer

treatments, and the other question asked if members of the treatment staff

made an effort to include the respondents’ families in important decisions.

The following results suggest that quality of life and many aspects of cancer

care amenable to intervention are associated with satisfaction with cancer

care, including shared decision-making, anticipation of side effects, addressing

the worries and fears of the patients, increased coordination of care and

elimination of barriers to care.

table 13: Satisfaction with care for cancer patients by cancer type, wisconsin, 2004

Satisfactiontotals

n=1653Breastn=568

Colorectaln=448

Lungn=139

Prostaten=498

Poor 3% 3% 4% 3% 3%

Fair 27% 29% 25% 35% 23%

Good 41% 42% 44% 44% 35%

Excellent 30% 27% 26% 19% 40%

table 14: Satisfaction with care according to the decision-making process for most cancer treatments, wisconsin, 2004

Satisfaction

treatment staff made most of the decisions

n=287


n=167

Patient made most of the

decisions with treatment staff

n=1,186

Poor 12% 3% 1%

Fair 40% 29% 23%

Good 34% 39% 42%

Excellent 14% 29% 34%


22

table 15: Percent of cancer patients indicating low satisfaction with care for the 29 fACit-tS-PS questions, wisconsin, 2004

Question Area of Care% Reporting Low

Satisfaction*

1. Did your doctor(s) discuss other treatments, for example, alternative medicine or new treatments? Decision-Making 28.4%

2. Did the treatment staff discuss how your health and treatment may affect you emotionally? Comprehensive Care 27.8%

3. Did the treatment staff discuss how your health and treatment may affect your personal relationships? Comprehensive Care 25.4%

4. Did the treatment staff discuss how your health and treatment may affect your normal work (including housework)? Comprehensive Care 14.0%

5. Did the treatment staff discuss how your health and treatment may affect your normal daily activities? Comprehensive Care 13.9%

6. Did your doctor(s) explain the possible side effects or risks of your treatment? Explanations 12.4%

7. Were you encouraged to participate in decisions about your health care? Decision-Making 11.5%

8. Did you have enough information to make decisions about your health care? Decision-Making 10.1%

9. Did you have enough time to make decisions about your health care? Decision-Making 8.5%

10. Were you able to talk to your doctor(s) when you needed to? Comprehensive Care 8.1%

11. Did your doctor(s) seem to understand what was important to you? Interpersonal Care 7.9%

12. Did your doctor(s) seem to respect your opinions? Decision-Making 7.6%

13. Did your doctor(s) seem to understand your needs? Comprehensive Care 6.7%

14. Did your nurse(s) give explanations that you could understand? Nursing Care 6.5%

15. Did your doctors(s) give explanations that you could understand? Explanations 6.5%

16. Did you get to say the things that were important to you? Interpersonal Care 6.3%

17. Did your nurse(s) seem to understand your needs? Nursing Care 5.9%

18. Did your doctor(s) explain the possible benefits of your treatment? Explanations 5.8%

19. Did your nurse(s) show genuine concern for you? Nursing Care 5.5%

20. Did you feel that the treatment staff answered your questions honestly? Trust 5.3%

21. Did your doctor(s) show genuine concern for you? Interpersonal Care 5.3%

22. Did you feel that the treatment staff worked together towards the same goal? Comprehensive Care 4.8%

23. Did you have an opportunity to ask questions? Explanations 4.7%

24. Did you trust your doctor’s suggestions for treatment? Trust 4.4%

25. Did you have confidence in your doctor(s)? Trust 4.3%

26. Did you feel your doctor(s) knew about the latest medical developments for your illness? Technical Quality 4.3%

27. Was the treatment staff thorough in examining and treating you? Technical Quality 3.8%

28. Did you feel your doctor(s) had experience treating your illness? Technical Quality 3.1%

29. Did the treatment staff respect your privacy? Trust 2.6%

* Low satisfaction reflected respondents answering either “No, not at all” or “Yes, but not as much as I wanted”; remaining answer options included “Yes, almost as much as I wanted” and “Yes, as much as I wanted”.


23

Comprehensive Care

Among the patients who reported

that the treatment staff made an

effort to include family members in

important decisions, 76% reported

good or excellent satisfaction with

their care. Among the patients

that reported the treatment staff

did not make an effort to include

family members, 41% reported


care. Satisfaction with care was

also correlated with anticipation of

side effects, coordination of care,

and consideration of the patient’s

worries and fears (table 16).

Barriers

Travel difficulties, age, lack

of insurance, and problems

understanding written medical

information were correlated with

patient satisfaction. For example

52% of patients who reported

problems understanding written

materials about their medical

condition reported good or

excellent satisfaction, compared

to 73% of patients who do not

report these problems.

Self-Rated Overall Health

Satisfaction with care was strongly

associated with self-reported

current health. Respondents who

rated their health as excellent

were much more likely to report


care (87%) than respondents who

reported poor current health (55%).

table 16: Satisfaction with care according to treatment barriers, care received, and self-reported health, wisconsin, 2004*

overall Measure of Satisfaction

Poor or Fair

Good or Excellent

CoMPReHenSIVe CARe

Was an effort made to include the patient's family in important decisions?

no 58.7% 41.3%

yes 24.2% 75.8%

Did the patient feel that his/her worries and fears were addressed by the treatment staff?

no 51.4% 48.6%

yes 23.1% 76.9%

Did the patient feel that the treatment staff coordinated care in an attempt to manage all of his/her symptoms?

no 68.4% 31.6%

yes 25.1% 74.9%

Did the patient experience any side effects that were not expected?

no 23.6% 76.4%

yes 41.6% 58.4%

BARRIeRS

Did the patient report travel issues receiving cancer treatments?

no 29.4% 70.6%

yes 51.7% 48.3%

Did the patient report that he/she felt age restricted the choices that were offered?

no 28.2% 71.8%

yes 71.9% 28.1%

Did the patient report difficulties due to a lack of insurance?

no 29.0% 71.0%

yes 50.0% 50.0%

Did the patient report problems learning about his/her medical condition because of difficulty understanding written information?

no 27.0% 73.0%

yes 48.3% 51.7%

SeLF-RAteD oVeRALL HeALtH

Self-reported current health excellent 13.3% 86.7%

Very Good 24.1% 75.9%

Good 34.3% 65.7%

Fair 44.5% 55.5%

Poor 45.0% 55.0%

* Note: Percentages in each row add to 100%.


24

ChAPtER thREE total Symptom management and Quality of life

oBJeCtIVe #3Assess patient quality of life

A. Determine whether total symptom management was addressed during the course of care

B. Determine whether patients encountered barriers to achieving

total symptom management

SUMMARy

Impediments to effective symptom management can arise from different sources. Lack of insurance not only makes

it difficult to obtain treatment, but to obtain services related to quality of life. Additional barriers such as lack of

transportation and literacy barriers also affect a cancer patient’s ability to obtain services related to quality of life.

The ACCESS study surveyed cancer patients about the following symptoms: pain, shortness of breath or a bad cough,

nausea or vomiting, severe tiredness or fatigue, and depression and/or anxiety. Respondents were first asked if they

experienced a specific symptom during or after any of their cancer treatments. If the respondents experienced the

symptom, they were then asked if they told the treatment staff about this symptom. If the respondents informed the

treatment staff, they reported whether the treatment staff helped them feel better with medication or any other approach.

Respondents answered additional questions about

memory or concentration problems, unexpected side

effects, emotional concerns, and quality of life. As an

overall measure of the coordination of care, respondents

were asked if their treatment staff coordinated care in

an attempt to manage all of their symptoms. While the

importance placed on specific quality of life indicators

often varies between individuals, this study indicates a

need for a better understanding of why some patients do

not experience total symptom management.

Results also indicate respondents are more likely to

report that the treatment staff did not coordinate care in

an attempt to manage all symptoms if they experienced

barriers to cancer care, unexpected side effects, or low

satisfaction with care. Communication problems appear

to correlate with poor symptom management. Finally,

respondents were more likely to report that the treatment

staff addressed their worries and fears if they were

younger, more educated, had a higher income, felt they

were involved with the decision-making process, had

health insurance, were satisfied with the health care they

received, and reported higher quality of life.


25

Coordination of Care

Most respondents (89%)

reported that the treatment

staff coordinated their care in an

attempt to manage all symptoms.

This percentage did not vary by

educational attainment, income,

number of comorbidities or

type of cancer (data not shown).

Coordination of care was, however,

associated with overall satisfaction

with cancer care and insurance

and age barriers (table 17).

For patients that reported having

one doctor who was primarily

responsible for his/her cancer

care, 92% reported that their

care was coordinated. For patients

that did not report that one

doctor was primarily responsible

for his/her care, 79% reported

coordinated care.

Side Effects and Symptoms

One-third of all respondents

reported no side effects or

symptoms during or after any

of their cancer treatments. Side

effects varied by type of cancer

and treatment (figures 7-10).

table 17: Percent of respondents who reported that the treatment staff coordinated care to manage symptoms according to other treatment-related characteristics, wisconsin, 2004*

Reported Coordination of

Care

yes no

Reported having health insurance no 60.7% 39.3%

yes 90.6% 9.4%

Reported that age restricted the choices they were offered

no 90.3% 9.7%

yes 64.2% 35.8%

Reported problems filling out medical forms by him/herself

Patient and treatment staff together mad most

of the decisions92.6% 7.4%


86.8% 13.2%

Treatment staff made most of the decisions

85.6% 14.4%

Reported that the treatment staff made an attempt to include family members in important treatment decisions

no 72.6% 27.4%

yes 92.9% 7.1%

Reported obtaining information from treatment staff to inform treatment decisions

no 69.4% 30.6%

yes 91.1% 8.9%

Reported that one doctor was primarily responsible for cancer care

no 79.3% 20.7%

yes 92.3% 7.7%

Reported the use of any complementary or alternative therapies to manage cancer-related side effects or for cancer treatment

no 90.7% 9.3%

yes 80.5% 19.5%

Reported experiencing a side effect that was not expected

no 91.6% 8.4%

yes 84.6% 15.4%

Overall reported satisfaction with the care received

Poor or Fair 38.5% 61.5%

Good 73.0% 27.0%

Very Good 87.2% 12.8%

excellent 95.7% 4.3%



26

31% 28%

10% 8%

31%

46%54%

31%

68%

46% 46%55%

11%

44%53%

36%

60%67%

19%

43%47%

0%

25%

50%

75%

Unexpected Pain Cough Nausea Fatigue Depression Concentration

Radiation and Surgery (N=212) Chemotherapy, Surgery and Radiation (N=210) Chemotherapy and Surgery (N=80)

Figure 7: Reported symptoms by the top three reported treatment modalities for bREASt CAnCER, wisconsin, 2004

Figure 8: Reported symptoms by the top three reported treatment modalities for ColoRECtAl CAnCER, wisconsin, 2004

Figure 9: Reported symptoms by the top three reported treatment modalities for lung CAnCER, wisconsin, 2004

Figure 10: Reported symptoms by the top three reported treatment modalities for PRoStAtE CAnCER, wisconsin, 2004


27

Symptom Management

Survey respondents were asked

about management of five specific

side effects of treatment (figure

11). Most respondents experiencing

these symptoms informed the

treatment staff (range, 71%-96%)

and received some relief with

treatment (range, 46%-88%).

However, respondents often

did not experience complete

relief from side effects (range,

27%-60%)

Reported Side Effect

Figure 11: Symptom management: Among those that reported having symptoms, the percent of patients that informed their treatment staff, got help from their treatment staff, and got adequate relief of symptoms, wisconsin, 2004


28

Patient Worries and Fears

Nearly 76% of respondents

reported that their worries and

fears were addressed by the

treatment staff. Patients who

reported that their worries and

fears were addressed by the

treatment staff were more likely to

report greater household income,

higher education, white race, and

younger age (figure 12). This

percentage was correlated with

several other factors including:

reporting that one doctor was

primarily responsible for cancer

care; currently having health

insurance; reporting problems

filling out medical forms; reporting

troubles taking medications

properly by themselves; and

reporting problems learning about

the medical condition because of

difficulty understanding written

information (table 18). Other

factors including self-reported

health, reporting that age

restricted the choices offered, and

shared decision making were also

associated with reporting that

worries and fears were addressed

by the treatment staff.

income

Education Race

Age

Figure 12: Percent of respondents reporting that their worries and fears were addressed by the treatment staff according to income, educational attainment, race, and age, wisconsin, 2004


29

table 18: Percent of respondents who reported that the treatment staff addressed their worries and fears according to other treatment-related characteristics, wisconsin, 2004 *

treatment Staff Addressed Worries

and Fears

yes no

Reported having health insurance no 49.2% 50.8%

yes 77.1% 22.9%

Reported that age restricted the choices they were offered no 77.1% 22.9%

yes 48.2% 51.8%

Reported problems filling out medical forms by him/herself no 78.7% 21.3%

yes 71.1% 28.9%

Reported difficulties taking medications properly by him/herself no 78.3% 21.7%

yes 66.3% 33.7%

Reported obtaining information from treatment staff to inform treatment decisions yes 78.6% 21.4%

no 68.1% 31.9%

Reported that one doctor was primarily responsible for cancer care

Patient made most of the decisions with the treatment staff

81.6% 18.4%


70.1% 29.9%

Treatment staff made most of the decisions

62.8% 37.2%

Reported that the treatment staff made an attempt to include family members in important treatment decisions

no 54.0% 46.0%

yes 81.0% 19.0%

Reported that one doctor was primarily responsible for cancer care no 61.3% 38.7%

yes 77.4% 22.6%

Overall reported satisfaction with the care received Poor or Fair 23.5% 76.5%

Good 55.0% 45.0%

Very Good 71.9% 28.1%


Self-rated overall quality of life Poor 57.6% 42.4%

Fair 64.9% 35.1%

Good 77.1% 22.9%

Very Good 82.6% 17.4%




30

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Wisconsin’sComprehensive Cancer Control ProgramPrevention • Screening & Detection • Treatment • Quality of Life • Palliative Care

A C C E S SAssessment of

Cancer Care and Satisfaction

Wisconsin’s Survey of Cancer Treatment, Barriers to Care,

and Patient Satisfaction

Summary of Results October 2008

assessment of cancer care and satisfaction€¦ · progress towards developing improved cancer...

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