Whose quality of life is it anyway? Discrepancies between youth and parent health-related quality of life ratings in type 1 and type 2 diabetes

• Published in: Quality of life research 2016-05, Vol.25 (5), p.1113-1121
• Main Authors: Yi-Frazier, Joyce P., Hilliard, Marisa E., Fino, Nora F., Naughton, Michelle J., Liese, Angela D., Hockett, Christine W., Hood, Korey K., Pihoker, Catherine, Seid, Michael, Lang, Wei, Lawrence, Jean M.
• Format: Article
• Language: English
• Subjects: Adolescent; Adolescents; Age; Age groups; Bias; Child; Child, Preschool; Children; Children & youth; Chronic illnesses; Diabetes; Diabetes Mellitus, Type 1 - psychology; Diabetes Mellitus, Type 2 - psychology; Epidemiology; Female; Health Status; Health Surveys; Humans; Insulin; Laboratories; Male; Medicine; Medicine & Public Health; METHODS; Parents; Parents & parenting; Pediatrics; Proxy; Public Health; Quality of Life; Quality of Life Research; Questionnaires; Ratings & rankings; Sociology; Teenagers; Type 1 diabetes mellitus; Type 2 diabetes mellitus
• ISSN: 0962-9343; 1573-2649; 1573-2649
• DOI: 10.1007/s11136-015-1158-5

Purpose Health-related quality of life (HRQOL) is a critical diabetes outcome, yet differences between youth and parent-proxy ratings can make interpretation difficult. This study aims to explore potential differences between self-and parent-reports of Pediatric Quality of Life Inventory (PedsQL) scores from youth with type 1 (T1D) or type 2 diabetes (T2D) and to evaluate associations between discrepancies, PedsQL scores, and glycemic control (HbA1c). Methods Youth and parents in the SEARCH for Diabetes in Youth Study (T1D: age 5-18, n = 3402; T2D: age 8-18, n = 353) completed the PedsQL Generic and Diabetes Modules, and youth provided a blood sample to assess HbAlc. Discrepancies (youth minus parent PedsQL ratings) were calculated and examined by age and diabetes type, and associations with youth PedsQL scores and HbAlc were evaluated. Results Discrepancies existed between youth and parentproxy reports of generic and diabetes PedsQL scores in T1D and T2D (all p values < 0.01). Higher (more favorable) ratings were reported by youth except for those 5-7-years old, where parents' scores were higher. When parentproxy scores were higher, discrepancies were largest when the child reported low PedsQL scores. Higher HbAlc was associated with larger discrepancies (youth scores higher) for adolescents with T1D. Conclusions Discrepant PedsQL ratings suggest that parents may often underestimate youths' HRQOL except in the youngest children. Although examining both reports is optimal, the youth report should be prioritized, particularly for young children with T1D and for adolescents with either T1D or T2D.