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Assessing burden among caregivers of pediatric dialysis and kidney transplant patients
Brianna Borsheim1,2, Jill Krissberg3,4, Debora Matossian3,4
1Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA. bborsheim@luriechildrens.org.
Insights
Caregiver burden is significant in pediatric kidney disease. Children on dialysis showed higher burden scores than those post-kidney transplant, indicating a need for further research.
Area of Science:
- Pediatric Nephrology
- Caregiver Support
- Quality of Life Studies
Background:
- Caregiver burden in pediatric kidney disease is often overlooked and unquantified.
- The Pediatric Renal Caregiver Burden Scale (PR-CBS) is a validated instrument for assessing this burden.
- This study focused on caregivers of children undergoing dialysis, early post-kidney transplant (KT), and late post-KT.
Purpose of the Study:
- To assess caregiver burden in pediatric kidney disease patients across different treatment phases (dialysis vs. post-KT).
- To evaluate the feasibility of a translated PR-CBS for Spanish-speaking caregivers.
- To quantify caregiver burden using the PR-CBS tool.
Main Methods:
- A cross-sectional study design was employed.
- Caregivers completed the PR-CBS during clinic visits.
- Descriptive statistics and t-tests were used for analysis.
Main Results:
- Twenty-six caregivers completed the survey (5 on dialysis, 21 post-KT).
- Caregivers of children on dialysis reported higher total burden scores (160) compared to post-KT (117), though not statistically significant (p=0.09).
- Significant differences were observed in family life (p=0.04) and caregiver identity (p=0.03) domains, favoring dialysis caregivers.
Conclusions:
- Caregivers of children with kidney failure experience substantial burden.
- A trend of higher burden was noted in caregivers of children on dialysis versus post-KT.
- Larger studies are required to confirm these findings and inform support strategies.
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.
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