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

Joann Carlson, Arlene C. Gerson, Matthew B. Matheson, Sharon Manne, Marc Lande, Lyndsay Harshman, Rebecca J. Johnson, Shlomo Shinnar, Amy J. Kogon, Bradley Warady, Susan Furth, Stephen Hooper

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1 Scopus citations


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. Graphical abstract: [Figure not available: see fulltext.]

Original languageEnglish (US)
Pages (from-to)4127-4136
Number of pages10
JournalPediatric Nephrology
Issue number12
StatePublished - Dec 2023

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health
  • Nephrology


  • Chronic kidney disease
  • Longitudinal
  • Parent–child agreement
  • Pediatric nephrology
  • Psychosocial
  • Quality of life


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