Elise Maher, Elizabeth Waters, Louisa Salmon, Dinah Reddihough, Roslyn Boyd

Royal Children’s Hospital, Melbourne, Australia

Thematic Data for the Development of a Condition-

Specific Measure of Quality of Life in Children with Cerebral

Palsy

What is Cerebral Palsy?

• Cerebral Palsy- “disorder of movement control, which results from damage to part of the brain.”

• Occurs in 2-2.5 per 1000 births (Stanley et al, 2000)

• Physical problems: weakness, stiffness, clumsiness, difficulty coordinating movements.

• Social and emotional problems: Peer rejection, depression, frustration, anxiety, anger.

• Associated problems: Epilepsy, visual and hearing impairment, intellectual disability.

Treatment and Outcome Variables

• Range of therapies/interventions that require empirical-based evidence.

• Outcome measures that have been used include: • spasticity rating scales• tests of gross and fine motor skills• gait analysis• more recently, HRQOL and QOL

Issues in Measuring QOL of Children

• Definitions of QOL

• Domains of QOL

• Parent proxy report versus child self-report?

– Age for self-report?

– Cognitive skills of child- different versions?

Definitions of Quality of Life for Children

• Complex and difficult to operationalise.

• QOL “includes but is not limited to the social, physical and emotional functioning of the child and when indicated, his or her family, and it must be sensitive to the changes that occur throughout development.” (Bradlyn et al., 1996)

• HRQOL “a rubric, encompassing various aspects of personal experience, including physical and psychological health, cognitive factors, social role performance and general life satisfaction.”(Warchausky et al., 2002)

QOL in Adult Literature

• QOL is usually described as an overall assessment of wellbeing. HRQOL is a subset of QOL (Spilker, 1996).

• HRQOL is a multidimensional construct including 3 broad domains; physical, mental and social (Bouman, 1999).

• QOL refers to satisfaction with health and non-health domains (Cummins, 2003).

Scales Used to Measure QOL/ HRQOL of Children with Cerebral Palsy

• Generic Measures� Child Health Questionnaire (CHQ)

• Condition-Specific Measures� Lifestyle Assessment Questionnaire (LAQ)� Caregiver Questionnaire (CQ)� PODCI (Paediatric Orthopaedic Society of North

America)

QOL Scales

• The Child Health Questionnaire: • Physical functioning, behaviour, mental health, general

health, social and family functioning, family cohesion, self-esteem, pain

• Caregiver Questionnaire:• Personal care, positioning/transferring, comfort and

interaction

QOL Scales

• Lifestyle Assessment QuestionnairePhysical independence, clinical burden, mobility, schooling, economic burden and social integration

• PODCIcomorbidity index, upper extremity and physical function, mobility, pain, expectations, happiness

Limitations of Existing Scales

Limitation Scale1) Domains are determined a priori by researchers/clinicians

CHQ.PODCI

2) Parent proxy only LAQ, CQ

3) Focus on physical health and functioning PODCI, CQ

4) Assume that the absence of difficulties/ limitations indicates the presence of high QOL

CHQ, CQ,PODCI

5) May not be responsive to change over time or following interventions

CHQ

Aim of Study

• To develop a psychometrically sound scale to

measure QOL of children with cerebral palsy that:

» Has proxy and self-report versions

» The domains of QOL are determined by children, parents, researchers and clinicians.

• Qualitative study using grounded theory.

Interviewed children with cerebral palsy and their

parents to identify the major themes of QOL.

Method

Participants:

21 families from the Victorian Cerebral Palsy Register.

Age: 4-8 years- parent proxy; 9-12 years-parent/child

Severity: Level I & II (n= 8); III & IV (n=6); V (n=7)

Socioeconomic status: High SES (n=13); Low SES (n=8)

Geographic location: Metropolitan (n=13); Rural (n=8)

Method

Semi-structured interviews:

Questions based on review of literature, including:

• When everything is going great for you/your child,

what sort of things are happening in your/his/her life?

• What about when things are not so good?

• What kind of things do you/your child need for a good

QOL?

Summary of Responses: Impact of CP

Mild/Moderate CP• Little impact of their

disease when things going well

• When unwell, physical abilities compromised, withdrawn, pain, frustrated

Severe CP• Little impact of their

disease when things going well

• When unwell, constant assistance, housebound, unable to do normal activities

Themes of QOL

Physical Health

Body pain and discomfort

Daily living tasks

Participation in regular activities

Future QOL

Family health

Financial stability

Emotional wellbeing

and self-esteem

Access to services

Supportive physical environment

Social wellbeing

Communication

Interaction with the community

Discussion of Findings

• Themes of QOL

– Health themes

– Themes specific to children

– Themes specific to cerebral palsy

– Practical themes

Implications

• Measurement: A condition-specific scale of QOL for

children with cerebral palsy.

• Clinical interventions: Need to focus on physical and

social outcomes.

• Community Care: Supportive environments, access

to respite, and therapeutic interventions will improve

outcomes for the family.

Future Directions

• Currently reviewing the themes identified by parents

and children and consulting with clinically-related

experts.

• Stage 2: Field testing in clinical trials to test the

acceptability and appropriateness, reliability, validity,

and responsiveness.

Acknowledgments• Children, Parents and Families

• Funding:

• CP Theme Grant, Telstra Foundation

• Murdoch Children’s Research Institute

• National and International Collaborators:• Bjornson & McLaughlin, Seattle Children’s Medical Centre

• Stevenson, North American Growth in CP Project

• Blair, Western Australian CP Register

• Hoare, DISABKIDS

• Ravens-Sieberer, KIDSCREEN and KINDL