1. 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

2. 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.

3. 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

4. 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?

5. 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)

6. 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).

7. 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)

8. 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

9. QOL Scales Lifestyle Assessment Questionnaire Physical independence, clinical burden, mobility, schooling, economic burden and social integration PODCI comorbidity index, upper extremity and physical function, mobility, pain, expectations, happiness

10. Limitations of Existing Scales

11. 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.

12. 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)

13. 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?

14. 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

15. Themes of QOL Physical Health Body pain and discomfort Daily living tasks Participation in regular activities Future QOL

16. Family health Financial stability Emotional wellbeing and self-esteem

17. Access to services Supportive physical environment Social wellbeing Communication Interaction with the community

18. Discussion of Findings Themes of QOL –Health themes –Themes specific to children –Themes specific to cerebral palsy –Practical themes

19. 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.

20. 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.

21. 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