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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
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    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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    U18DP002708/DP/NCCDPHP CDC HHS/United States
    P30 DK057516/DK/NIDDK NIH HHS/United States
    1U18DP002709/DP/NCCDPHP CDC HHS/United States
    U48/CCU819241-3/PHS HHS/United States
    U01 DP000247/DP/NCCDPHP CDC HHS/United States
    8 UL1 TR000077/TR/NCATS NIH HHS/United States
    U18 DP002710/DP/NCCDPHP CDC HHS/United States
    U18DP002714/DP/NCCDPHP CDC HHS/United States
    U01 DP000245/DP/NCCDPHP CDC HHS/United States
    DP-05-069/DP/NCCDPHP CDC HHS/United States
    U48/CCU419249/PHS HHS/United States
    UL1 TR000154/TR/NCATS NIH HHS/United States
    K12 DK097696/DK/NIDDK NIH HHS/United States
    200-2010-35171/PHS HHS/United States
    U18 DP002714/DP/NCCDPHP CDC HHS/United States
    U01 DP000248/DP/NCCDPHP CDC HHS/United States
    U48/CCU919219/PHS HHS/United States
    DP-10-001/DP/NCCDPHP CDC HHS/United States
    U01 DP000244/DP/NCCDPHP CDC HHS/United States
    P30 DK57516/DK/NIDDK NIH HHS/United States
    U58CCU919256/PHS HHS/United States
    U18DP000247-06A1/DP/NCCDPHP CDC HHS/United States
    UL1 TR00423/TR/NCATS NIH HHS/United States
    U48/CCU519239/PHS HHS/United States
    U18DP002710-01/DP/NCCDPHP CDC HHS/United States
    UL1 RR029882/RR/NCRR NIH HHS/United States
    PA 00097/PHS HHS/United States
    U58/CCU019235-4/PHS HHS/United States
    U18 DP002709/DP/NCCDPHP CDC HHS/United States
    UL1 TR001425/TR/NCATS NIH HHS/United States
    UL1 TR000077/TR/NCATS NIH HHS/United States
    UL1 TR000423/TR/NCATS NIH HHS/United States
    U01 DP000250/DP/NCCDPHP CDC HHS/United States
    U01 DP000246/DP/NCCDPHP CDC HHS/United States
    U01 DP000254/DP/NCCDPHP CDC HHS/United States
    U18 DP002708/DP/NCCDPHP CDC HHS/United States
    UL1RR029882/RR/NCRR NIH HHS/United States
    HIR 10-001/HX/HSRD VA/United States
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