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

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Whose Life is it Anyway? Proxy v. Self reported quality of life in Childhood Cancer Survivors Penney Upton. What is Quality of Life?. ‘Subjective well-being\' or ‘life satisfaction’ ‘Health related quality of life’ (HRQL) refers to how health affects life satisfaction

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

Penney Upton

what is quality of life
What is Quality of Life?
  • ‘Subjective well-being\' or ‘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
why measure hrql
Why measure HRQL?
  • Changing emphasis in healthcare
  • Increased survivorship, but at a cost
  • Importance of patient perspective
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How is it measured?

  • Disease specific questionnaires are sensitive to intervention effects
  • Broader generic measurement allows comparison to the general population
issues in measurement
Issues in measurement
  • Developmental differences in the meaning of health
  • Limitations in cognitive or linguistic skills
  • Self or Proxy measure?
why use a proxy measure
Why use a proxy measure?
  • If child is unwilling or unable to complete a self report
  • Parent report provides different perspective
  • Need both parent and child for a complete picture
factors influencing parent child agreement
Factors influencing parent-child agreement
  • Child and parent gender
  • Child age – child v. adolescent
  • Health status of the child
  • Component of HRQL being assessed
unanswered questions in parent child agreement
Unanswered questions in parent-child agreement
  • Is agreement better for observable physical or emotional functioning?
  • What is the direction of any differences in ratings?
  • What is the influence of child illness?
  • Group or individual analysis?
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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.
method
Method
  • 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)
  • 70 cancer survivors(35 males and 35 females)
summary of results
Summary of Results
  • Mother-child agreement not associated with child age
  • Better agreement for females on the emotional functioning sub-scale
  • Better agreement for cancer survivors on all summary and subscales of PedsQL™
comparison of mother child agreement at group level
Comparison of mother-child agreement at group level
  • Group level analysis showed significant differences on all scales
  • Effect size of differences was trivial or small (d=0.03-0.23)
  • Mother’s of survivors more likely to underestimate HRQL
implications of these findings
Implications of these findings
  • Mothers can provide an accurate estimate of their child’s HRQL using PedsQL
  • 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 does child health influence agreement
Why does child health influence agreement?
  • Focus on child health leads to:
    • Better communication
    • Increased parental knowledge and understanding of HRQL implications
  • Methodological issue?
a caveat to the use of parent reports
A caveat to the use of parent reports:
  • Researchers/clinicians must be clear on what they want to gain from using a parent report
  • Are instructions to parents clear?
conclusion
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…….

…….whose life is it anyway?

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