Self and parent-proxy rated health-related quality of life (HRQoL) in youth with obesity: are parents good surrogates?

PURPOSE: Consideration of health-related quality of life (HRQoL) and wellbeing outcomes is important to guide healthcare services for youth with obesity, yet youth perspectives may differ from their parents. This study compared youth and parental HRQoL reports and evaluated levels of concordance across HRQoL domains and as a function of youth age, youth gender and parent informant (mother and father). METHODS: 376 youths with obesity, recruited from community (N = 223) and hospital settings (N = 153), and their parents (N = 190 mothers; N = 91 fathers), completed the PedsQL. Parental and youth agreement across subgroup dyads (mother; father; child gender; child age) were evaluated using Wilcoxon signed-rank test, intra-correlations coefficients (ICCs) and Bland-Altman plots. RESULTS: Compared to norms, HRQoL levels (youth self-report and parental proxy reports) were lower in all domains. Both mother and fathers' HRQoL reports were significantly lower than youths, most notably in physical HRQoL. Youth-parent concordance ranged from poor to moderate (ICC = 0.230-0.618), with lowest agreement for Physical HRQOL. Mothers were better proxies with ICCs being significant in all domains. Youth-father ICCs were significant only for Social (ICC = 0.428) and School (ICC = 0.303) domains. Girl-mother agreement was significant across all domains, while girl-father agreement was significant only in the Social domain (ICC = 0.653). Both mothers and fathers were poor raters for boys, and younger youths (aged ≤ 12), with non-significant ICCs in most HRQoL domains. CONCLUSIONS: Parents are poor surrogates for youth HRQoL. Clinicians should be cognizant that parents are not necessarily accurate proxies for youths, and exercise caution when interpreting parent-proxy scores.