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Longitudinal changes of health-related quality of life in childhood chronic kidney disease

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An Editorial Commentary to this article was published on 06 July 2023

Abstract

Background

Few longitudinal studies have evaluated the impact of chronic kidney disease (CKD) duration on health-related quality of life (HRQOL). The study’s aim was to determine how HRQOL changes over time in childhood CKD.

Methods

Study participants were children in the chronic kidney disease in children (CKiD) cohort who completed the pediatric quality of life inventory (PedsQL) on three or more occasions over the course of two or more years. Generalized gamma (GG) mixed-effects models were applied to assess the effect of CKD duration on HRQOL while controlling for selected covariates.

Results

A total of 692 children (median age = 11.2) with a median of 8.3 years duration of CKD were evaluated. All subjects had a GFR greater than 15 ml/min/1.73 m2. GG models with child self-report PedsQL data indicated that longer CKD duration was associated with improved total HRQOL and the 4 domains of HRQOL. GG models with parent-proxy PedsQL data indicated that longer duration was associated with better emotional but worse school HRQOL. Increasing trajectories of child self-report HRQOL were observed in the majority of subjects, while parents less frequently reported increasing trajectories of HRQOL. There was no significant relationship between total HRQOL and time-varying GFR.

Conclusions

Longer duration of the disease is associated with improved HRQOL on child self-report scales; however, parent-proxy results were less likely to demonstrate any significant change over time. This divergence could be due to greater optimism and accommodation of CKD in children. Clinicians can use these data to better understand the needs of pediatric CKD patients.

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Data availability

Data from this manuscript will not be publicly released.

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Funding

Data in this manuscript were collected by the Chronic Kidney Disease in children prospective cohort study (CKiD) with clinical coordinating centers (principal investigators) at Children’s Mercy Hospital and the University of Missouri—Kansas City (Bradley Warady, MD) and Children’s Hospital of Philadelphia (Susan Furth, MD, PhD), Central Biochemistry Laboratory (George Schwartz, MD) at the University of Rochester Medical Center, and data coordinating center (Alvaro Muñoz, PhD and Derek Ng, PhD) at the Johns Hopkins Bloomberg School of Public Health. The CKiD Study is supported by grants from the National Institute of Diabetes and Digestive and Kidney Diseases, with additional funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the National Heart, Lung, and Blood Institute (U01-DK-66143, U01-DK-66174, U24-DK-082194, U24-DK-66116). The CKiD website is located at https://statepi.jhsph.edu/ckid.

Author information

Authors and Affiliations

  1. Rutgers Robert Wood Johnson Medical School, New Brunswick, NJ, USA

    Joann Carlson & Sharon Manne

  2. The Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Arlene C. Gerson

  3. Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Matthew B. Matheson

  4. University of Rochester Medical Center, Rochester, NY, USA

    Marc Lande

  5. Stead Family Department of Pediatrics, University of Iowa Carver College of Medicine, Iowa City, IA, USA

    Lyndsay Harshman

  6. Children’s Mercy Kansas City, UMKC School of Medicine, Kansas City, MO, USA

    Rebecca J. Johnson & Bradley Warady

  7. Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY, USA

    Shlomo Shinnar

  8. Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Amy J. Kogon & Susan Furth

  9. School of Medicine, University of North Carolina-Chapel Hill, Chapel Hill, NC, USA

    Stephen Hooper

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  1. Joann Carlson
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Correspondence to Joann Carlson.

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Carlson, J., Gerson, A.C., Matheson, M.B. et al. Longitudinal changes of health-related quality of life in childhood chronic kidney disease. Pediatr Nephrol 38, 4127–4136 (2023). https://doi.org/10.1007/s00467-023-06069-8

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