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

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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

  • Physical, social and emotional components of well-being and function


Why measure HRQL?

  • Changing emphasis in healthcare

  • Increased survivorship, but at a cost

  • Importance of patient perspective


How is it measured?

  • Disease specific questionnaires are sensitive to intervention effects

  • Broader generic measurement allows comparison to the general population


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?

  • 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

  • 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

  • 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?


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

  • 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

  • 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 individual level

* P< 0.001


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

  • 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?

  • 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:

  • Researchers/clinicians must be clear on what they want to gain from using a parent report

  • Are instructions to parents clear?


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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