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Background <p>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&#xa0;days), and late post-KT (&gt; 1&#xa0;year). Additionally, we aimed to demonstrate the feasibility of a translated PR-CBS among Spanish-speaking caregivers.</p> Methods <p>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 <i>t</i>-tests were performed.</p> Results <p>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, <i>p</i> = 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, <i>p</i> = 0.04 and <i>p</i> = 0.03). PR-CBS scores did not differ across demographics. Four surveys were completed in Spanish; no significant difference was found.</p> Conclusions <p>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.</p> Graphical Abstract <p></p>

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Assessing burden among caregivers of pediatric dialysis and kidney transplant patients

  • 期刊论文

  • 发表日期：

    2025年2月3日

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  • Brianna Borsheim,
  • Jill Krissberg,
  • Debora Matossian,
  • Priya S. Verghese

摘要

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.

Graphical Abstract