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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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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.

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Acknowledgments

The SEARCH for Diabetes in Youth Study is indebted to the many youth and their families, and their health care providers, whose participation made this study possible. The authors wish to acknowledge the involvement of General Clinical Research Centers (GCRC) at the South Carolina Clinical & Translational Research (SCTR) Institute, at the Medical University of South Carolina (NIH/NCRR Grant number UL1RR029882); Seattle Children’s Hospital (NIH CTSA Grant UL1 TR00423 of the University of Washington); University of Colorado Pediatric Clinical and Translational Research Center (CTRC) (Grant Number UL1 TR000154) and the Barbara Davis Center at the University of Colorado at Denver (DERC NIH P30 DK57516); and the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant 8 UL1 TR000077; and the Children with Medical Handicaps program managed by the Ohio Department of Health. The work of M.E.H. on this project was supported by K12 DK097696. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention and the National Institute of Diabetes and Digestive and Kidney Diseases.

Funding

SEARCH for Diabetes in Youth is funded by the Centers for Disease Control and Prevention (PA numbers 00097, DP-05-069, and DP-10-001) and supported by the National Institute of Diabetes and Digestive and Kidney Diseases.

Site contract numbers

Kaiser Permanente Southern California (U48/CCU919219, U01 DP000246, and U18DP002714), University of Colorado Denver (U48/CCU819241-3, U01 DP000247, and U18DP000247-06A1), Kuakini Medical Center (U58CCU919256 and U01 DP000245), Children’s Hospital Medical Center (Cincinnati) (U48/CCU519239, U01 DP000248, and 1U18DP002709), University of North Carolina at Chapel Hill (U48/CCU419249, U01 DP000254, and U18DP002708), University of Washington School of Medicine (U58/CCU019235-4, U01 DP000244, and U18DP002710-01), Wake Forest University School of Medicine (U48/CCU919219, U01 DP000250, and 200-2010-35171).

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Authors and Affiliations

  1. Department of Endocrinology, Seattle Children’s Research Institute, Seattle, WA, 98101, USA

    Joyce P. Yi-Frazier & Catherine Pihoker

  2. Department of Pediatrics, Baylor College of Medicine, Houston, TX, 77030, USA

    Marisa E. Hilliard

  3. Department of Biostatistical Sciences, Wake Forest School of Medicine, Winston-Salem, NC, USA

    Nora F. Fino

  4. Division of Population Sciences, The Ohio State University, Columbus, OH, 43201, USA

    Michelle J. Naughton & Wei Lang

  5. Department of Epidemiology and Biostatistics, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA

    Angela D. Liese

  6. Department of Epidemiology, Colorado School of Public Health, University of Colorado Denver, Aurora, CO, 80045, USA

    Christine W. Hockett

  7. Department of Pediatrics, Stanford University School of Medicine, Palo Alto, CA, 94305, USA

    Korey K. Hood

  8. Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, 98105, USA

    Catherine Pihoker

  9. Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, 45229, USA

    Michael Seid

  10. Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA, 91101, USA

    Jean M. Lawrence

Authors
  1. Joyce P. Yi-Frazier
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  2. Marisa E. Hilliard
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  3. Nora F. Fino
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  4. Michelle J. Naughton
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  5. Angela D. Liese
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  6. Christine W. Hockett
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  7. Korey K. Hood
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  8. Catherine Pihoker
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  9. Michael Seid
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  10. Wei Lang
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  11. Jean M. Lawrence
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Corresponding author

Correspondence to Joyce P. Yi-Frazier.

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Conflict of interest

No authors have any reported conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Joyce P. Yi-Frazier and Marisa E. Hilliard are co-first authors.

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Yi-Frazier, J.P., Hilliard, M.E., Fino, N.F. et al. 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. Qual Life Res 25, 1113–1121 (2016). https://doi.org/10.1007/s11136-015-1158-5

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  • DOI: https://doi.org/10.1007/s11136-015-1158-5

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