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01-05-2016 | Uitgave 5/2016

Quality of Life Research 5/2016

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

Quality of Life Research > Uitgave 5/2016
Joyce P. Yi-Frazier, Marisa E. Hilliard, Nora F. Fino, Michelle J. Naughton, Angela D. Liese, Christine W. Hockett, Korey K. Hood, Catherine Pihoker, Michael Seid, Wei Lang, Jean M. Lawrence
Belangrijke opmerkingen
A version of these results was presented at the International Society of Pediatric and Adolescent Diabetes meeting, on September 2014: Hilliard ME, Yi-Frazier JP, Fitzgerald NC, Hood KK, Naughton MJ, Lang W, Seid M, Liese AD, Hockett CW, Pihoker C, Lawrence JM for the SEARCH for Diabetes in Youth Study Group. Whose HRQOL is it anyway? Discrepancies between youth and parent health-related quality of life (HRQOL) ratings in type 1 and type 2 diabetes. Pediatric Diabetes 2014; 15 (Suppl 19): P120.
Joyce P. Yi-Frazier and Marisa E. Hilliard are co-first authors.



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).


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 HbA1c. Discrepancies (youth minus parent PedsQL ratings) were calculated and examined by age and diabetes type, and associations with youth PedsQL scores and HbA1c were evaluated.


Discrepancies existed between youth and parent-proxy 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 parent-proxy scores were higher, discrepancies were largest when the child reported low PedsQL scores. Higher HbA1c was associated with larger discrepancies (youth scores higher) for adolescents with T1D.


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.

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