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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2012

Open Access 01-12-2012 | Research

The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents

Authors: Jane NT Sattoe, AnneLoes van Staa, Henriëtte A Moll, On Your Own Feet Research Group

Published in: Health and Quality of Life Outcomes | Issue 1/2012

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Abstract

Background

Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.

Methods

A cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.

Results

584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.

Conclusions

In a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.
Appendix
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Metadata
Title
The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents
Authors
Jane NT Sattoe
AnneLoes van Staa
Henriëtte A Moll
On Your Own Feet Research Group
Publication date
01-12-2012
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2012
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-10-10

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