Presentation Authors: Michael Sadighian*, Elaine Allen, San Francisco, CA, Nima Baradaran, Columbus, OH, Kathryn Quanstrom, Benjamin Breyer, Hillary Copp, Lindsay Hampson, San Francisco, CA
Introduction: Little is known about caregivers of patients with congenital urologic conditions and the burden they experience. The primary aims of this study are to: 1) identify baseline characteristics of these caregivers and the patients they care for, and 2) identify predictors of caregiver burden in this population.
Methods: An anonymous survey was distributed via Facebook advertising to caregivers of patients with congenital urologic conditions. Caregiver burden was scored using the Caregiver Burden Inventory (CBI), where CBI â‰¥36 indicates risk of burnout. Patient urinary symptoms were assessed utilizing the Neurogenic Bladder Symptom Score (NBSS). The Transitional Readiness Assessment Questionnaire (TRAQ) was used to assess caregiver independence. STATA 15.1 was utilized for statistical analyses with a p < 0.05 considered statistically significant.
Results: In our study population (n=453), 26% of caregivers are so burdened by the care they provide that they are at risk of burning out (CBI score â‰¥36). Caregivers tended to be female (96.0%), married (79.1%), and had been serving as caregiver for 9 years on average. Bivariate analysis showed that CBI scores â‰¥36 were significantly associated with caregiver gender, household income, number of tasks performed by the caregiver, and NBSS. Models predicting overall caregiver burden showed less burden among older patients and those with higher income. Higher caregiver burden was associated with female caregivers.
Conclusions: Caregivers of patients with congenital urologic conditions experience significant burden. Based on our findings, urologists may be able to lessen caregiver burden by addressing urinary symptoms. Overall, helping patients become more independent so they are less reliant on their caregivers to help them perform caregiving tasks may also improve caregiver strain.
Source of Funding: (1) Grant from UCSF RAPTr Program, and (2) Grant from NIH/NIDDK K12K083021