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. 2025 Jun;40(6):2053-2058.
doi: 10.1007/s00467-025-06690-9. Epub 2025 Feb 3.

Assessing burden among caregivers of pediatric dialysis and kidney transplant patients

Brianna Borsheim  1   2 , Jill Krissberg  3   4 , Debora Matossian  3   4 , Priya S Verghese  3   4
Affiliations

Assessing burden among caregivers of pediatric dialysis and kidney transplant patients

Brianna Borsheim et al. Pediatr Nephrol. 2025 Jun.

Abstract

Background: Caregiver burden in pediatric kidney disease is under-recognized and unquantified. The Pediatric Renal Caregiver Burden Scale (PR-CBS) is a validated tool that evaluates caregiver burden in this population. This study assesses caregiver burden at a tertiary center pediatric hospital in the following groups: dialysis, early post-kidney transplant (KT) (30 to 364 days), and late post-KT (> 1 year). Additionally, we aimed to demonstrate the feasibility of a translated PR-CBS among Spanish-speaking caregivers.

Methods: In this cross-sectional study, caregivers were approached at clinic visits to complete the PR-CBS. Total PR-CBS scores (ranging 51 to 255) and mean domain scores (ranging 1 to 5) were calculated. Descriptive statistics and t-tests were performed.

Results: Of the 30 caregivers approached, 26 consented: five of children receiving dialysis and 21 post-transplant. Survey completion was 100%. Total burden score was higher for caregivers of children on dialysis than post-KT, but not significantly (160 vs. 117, p = 0.09). The mean score for every domain was higher for caregivers of children on dialysis with significant differences in family life and caregiver identity (respectively, p = 0.04 and p = 0.03). PR-CBS scores did not differ across demographics. Four surveys were completed in Spanish; no significant difference was found.

Conclusions: Caregivers of children with kidney failure experience significant burden. While a small sample size limited this study, there was a trend for higher burden scores among caregivers of children on dialysis compared to post-KT. A larger, adequately powered study is needed to further assess the degree of burden in this population.

Keywords: Caregiver burden; Hemodialysis; Kidney transplant; Pediatric; Peritoneal dialysis.

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Conflict of interest statement

Declarations. Ethics approval: Approved by Lurie Children’s Hospital IRB, approval number 2022–5413. The Office of Research Integrity and Compliance (ORIC) has reviewed the study and has determined that it is exempt from IRB review. The above IRB number has been assigned to this study for tracking purposes only. The consent to participate and publish was obtained with consent to be in study. Competing interests: The authors declare no competing interests.

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