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Qual Life Res. 2016 May;25(5):1113-21. doi: 10.1007/s11136-015-1158-5. Epub 2015 Oct 14.

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.

Author information

1
Department of Endocrinology, Seattle Children's Research Institute, Seattle, WA, 98101, USA. joyce.yi-frazier@seattlechildrens.org.
2
Department of Pediatrics, Baylor College of Medicine, Houston, TX, 77030, USA.
3
Department of Biostatistical Sciences, Wake Forest School of Medicine, Winston-Salem, NC, USA.
4
Division of Population Sciences, The Ohio State University, Columbus, OH, 43201, USA.
5
Department of Epidemiology and Biostatistics, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA.
6
Department of Epidemiology, Colorado School of Public Health, University of Colorado Denver, Aurora, CO, 80045, USA.
7
Department of Pediatrics, Stanford University School of Medicine, Palo Alto, CA, 94305, USA.
8
Department of Endocrinology, Seattle Children's Research Institute, Seattle, WA, 98101, USA.
9
Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, 98105, USA.
10
Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 45229, USA.
11
Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA, 91101, USA.

Abstract

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 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.

RESULTS:

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.

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.

KEYWORDS:

Glycemic control; Quality of life; Type 1 diabetes; Type 2 diabetes

PMID:
26466834
PMCID:
PMC4936832
DOI:
10.1007/s11136-015-1158-5
[Indexed for MEDLINE]
Free PMC Article

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