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

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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

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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

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Issues in measurement

• Developmental differences in the meaning of
  health
• Limitations in cognitive or linguistic skills
• Self or Proxy measure?

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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

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Factors influencing parent-child agreement

• Child and parent gender
• Child age child v. adolescent
• Health status of the child
• Component of HRQL being assessed

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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.

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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)

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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

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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
Plt 0.001
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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
  (d0.03-0.23)
• Mothers of survivors more likely to
  underestimate HRQL

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Implications of these findings

• Mothers can provide an accurate estimate of their
  childs 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?

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Why does child health influence agreement?

• Focus on child health leads to
• Better communication
• Increased parental knowledge and understanding of
  HRQL implications
• Methodological issue?

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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?

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Conclusion

• Parents can provide a proxy report for their
  child, but the gold standard for reporting
  childrens HRQL should be self report as with
  adults.

• .whose life is it anyway?