title: 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.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Endocrinology, Seattle Children's Research Institute, Seattle, WA, 98101, USA. joyce.yi-frazier@seattlechildrens.org.
authors.forename: Joyce P
authors.initials: JP
authors.lastname: Yi-Frazier
authors.affiliation: Department of Pediatrics, Baylor College of Medicine, Houston, TX, 77030, USA.
authors.forename: Marisa E
authors.initials: ME
authors.lastname: Hilliard
authors.affiliation: Department of Biostatistical Sciences, Wake Forest School of Medicine, Winston-Salem, NC, USA.
authors.forename: Nora F
authors.initials: NF
authors.lastname: Fino
authors.affiliation: Division of Population Sciences, The Ohio State University, Columbus, OH, 43201, USA.
authors.forename: Michelle J
authors.initials: MJ
authors.lastname: Naughton
authors.affiliation: Department of Epidemiology and Biostatistics, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA.
authors.forename: Angela D
authors.initials: AD
authors.lastname: Liese
authors.affiliation: Department of Epidemiology, Colorado School of Public Health, University of Colorado Denver, Aurora, CO, 80045, USA.
authors.forename: Christine W
authors.initials: CW
authors.lastname: Hockett
authors.affiliation: Department of Pediatrics, Stanford University School of Medicine, Palo Alto, CA, 94305, USA.
authors.forename: Korey K
authors.initials: KK
authors.lastname: Hood
authors.affiliation: Department of Endocrinology, Seattle Children's Research Institute, Seattle, WA, 98101, USA.|Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, 98105, USA.
authors.forename: Catherine
authors.initials: C
authors.lastname: Pihoker
authors.affiliation: Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 45229, USA.
authors.forename: Michael
authors.initials: M
authors.lastname: Seid
authors.affiliation: Division of Population Sciences, The Ohio State University, Columbus, OH, 43201, USA.
authors.forename: Wei
authors.initials: W
authors.lastname: Lang
authors.affiliation: Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA, 91101, USA.
authors.forename: Jean M
authors.initials: JM
authors.lastname: Lawrence
mesh_terms: D000293:Adolescent; D015982:Bias; D002648:Child; D002675:Child, Preschool; D003922:Diabetes Mellitus, Type 1 / Q000523:psychology*; D003924:Diabetes Mellitus, Type 2 / Q000523:psychology*; D005260:Female; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D008297:Male; D010290:Parents; D019727:Proxy; D011788:Quality of Life
keywords: Glycemic control; Quality of life; Type 1 diabetes; Type 2 diabetes