1. Whose Life is it Anyway? Proxy v. Self reported quality of life in Childhood Cancer Survivors Penney Upton

2. What is Quality of Life? ‘Subjective well-being' or ‘life satisfaction’ ‘Subjective well-being' or ‘life satisfaction’ ‘Health related quality of life’ (HRQL) refers to how health affects life satisfaction ‘Health related quality of life’ (HRQL) refers to how health affects life satisfaction Physical, social and emotional components of well-being and function Physical, social and emotional components of well-being and function

3. Why measure HRQL? Changing emphasis in healthcare Changing emphasis in healthcare Increased survivorship, but at a cost Increased survivorship, but at a cost Importance of patient perspective Importance of patient perspective

4. Disease specific questionnaires are sensitive to intervention effects Disease specific questionnaires are sensitive to intervention effects Broader generic measurement allows comparison to the general population Broader generic measurement allows comparison to the general population How is it measured?

5. Issues in measurement Developmental differences in the meaning of health Developmental differences in the meaning of health Limitations in cognitive or linguistic skills Limitations in cognitive or linguistic skills Self or Proxy measure? Self or Proxy measure?

6. Why use a proxy measure? If child is unwilling or unable to complete a self report If child is unwilling or unable to complete a self report Parent report provides different perspective Parent report provides different perspective Need both parent and child for a complete picture Need both parent and child for a complete picture

7. Factors influencing parent-child agreement Child and parent gender Child and parent gender Child age – child v. adolescent Child age – child v. adolescent Health status of the child Health status of the child Component of HRQL being assessed Component of HRQL being assessed

8. Unanswered questions in parent-child agreement Is agreement better for observable physical or emotional functioning? Is agreement better for observable physical or emotional functioning? What is the direction of any differences in ratings? What is the direction of any differences in ratings? What is the influence of child illness? What is the influence of child illness? Group or individual analysis? Group or individual analysis?

9. Aims To examine the extent of mother-child agreement in HRQL reporting and the influence of child gender, age and health status on the extent and direction of agreement. To examine the extent of mother-child agreement in HRQL reporting and the influence of child gender, age and health status on the extent and direction of agreement.

10. Method A cross-sectional sample of children (age range 8-18 years) and their mothers completed the Pediatric Quality of Life Inventory (PedsQL™) A cross-sectional sample of children (age range 8-18 years) and their mothers completed the Pediatric Quality of Life Inventory (PedsQL™) 474 healthy children (213 males and 261 females) 474 healthy children (213 males and 261 females) 70 cancer survivors(35 males and 35 females) 70 cancer survivors(35 males and 35 females)

11. Summary of Results Mother-child agreement not associated with child age Mother-child agreement not associated with child age Better agreement for females on the emotional functioning sub-scale Better agreement for females on the emotional functioning sub-scale Better agreement for cancer survivors on all summary and subscales of PedsQL™ Better agreement for cancer survivors on all summary and subscales of PedsQL™

12. Comparison of mother-child agreement at individual level Healthy Cancer survivors Total Score 0.31*0.59* Physical functioning 0.19*0.68* Emotional functioning 0.27*0.48* Social functioning 0.39*0.53* School functioning 0.35*0.45* * P< 0.001

13. Comparison of mother-child agreement at group level Group level analysis showed significant differences on all scales Group level analysis showed significant differences on all scales Effect size of differences was trivial or small (d=0.03-0.23) Effect size of differences was trivial or small (d=0.03-0.23) Mother’s of survivors more likely to underestimate HRQL Mother’s of survivors more likely to underestimate HRQL

14. Implications of these findings Mothers can provide an accurate estimate of their child’s HRQL using PedsQL Mothers can provide an accurate estimate of their child’s HRQL using PedsQL Proxies should be used where self-report is not available Proxies should be used where self-report is not available –May prevent research bias –Importance clinically - e.g. palliative care Why is agreement is better where the child has survived cancer? Why is agreement is better where the child has survived cancer?

15. Why does child health influence agreement? Focus on child health leads to: Focus on child health leads to: –Better communication –Increased parental knowledge and understanding of HRQL implications Methodological issue? Methodological issue?

16. A caveat to the use of parent reports: Researchers/clinicians must be clear on what they want to gain from using a parent report Researchers/clinicians must be clear on what they want to gain from using a parent report Are instructions to parents clear? Are instructions to parents clear?

17. Conclusion: Parents can provide a proxy report for their child, but the gold standard for reporting children’s HRQL should be self report as with adults……. Parents can provide a proxy report for their child, but the gold standard for reporting children’s HRQL should be self report as with adults……. …….whose life is it anyway?