WhoseLifeisitAnywayProxyv.Selfreportedqualityoflife

1、Whose Life is it Anyway? Proxy v. Self reported quality of life in Childhood Cancer SurvivorsPenney Upton1What is Quality of Life?Subjective well-being or life satisfactionHealth related quality of life (HRQL) refers to how health affects life satisfactionPhysical, social and emotional components of

2、 well-being and function2Why measure HRQL?Changing emphasis in healthcare Increased survivorship, but at a costImportance of patient perspective3Disease specific questionnaires are sensitive to intervention effectsBroader generic measurement allows comparison to the general populationHow is it measu

3、red?4Issues in measurementDevelopmental differences in the meaning of healthLimitations in cognitive or linguistic skillsSelf or Proxy measure?5Why use a proxy measure?If child is unwilling or unable to complete a self reportParent report provides different perspective Need both parent and child for

4、 a complete picture6Factors influencing parent-child agreementChild and parent genderChild age child v. adolescentHealth status of the childComponent of HRQL being assessed7Unanswered questions in parent-child agreementIs agreement better for observable physical or emotional functioning?What is the

5、direction of any differences in ratings?What is the influence of child illness?Group or individual analysis?8AimsTo 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. 9MethodA cross-section

6、al 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)10Summary of ResultsMother-child agreement not associated with child age Better agreem

7、ent for females on the emotional functioning sub-scaleBetter agreement for cancer survivors on all summary and subscales of PedsQL11Comparison of mother-child agreement at individual level * P 0.00112Comparison of mother-child agreement at group levelGroup level analysis showed significant differenc

8、es on all scalesEffect size of differences was trivial or small (d=0.03-0.23)Mothers of survivors more likely to underestimate HRQL13Implications of these findingsMothers can provide an accurate estimate of their childs HRQL using PedsQLProxies should be used where self-report is not availableMay pr

9、event research biasImportance clinically - e.g. palliative careWhy is agreement is better where the child has survived cancer?14Why does child health influence agreement? Focus on child health leads to:Better communicationIncreased parental knowledge and understanding of HRQL implicationsMethodological issue?15A caveat to the use of parent reports:Researchers/clinicians must be clear on what they want to gain from using a parent reportAre instructions to parents clear?16Conclusion:Parents can pr