WIP 46 - Financial Burden of Kidney Transplantation

Publication Number: WIP 46.7385

Mallory Mandel, Boston Children's Hospital, Boston, MA, United States; Camille Nicolas Frank, Boston Children's Hospital, Boston, MA, United States; Elizabeth Benoit, Boston Children's Hospital, Salisbury, MA, United States; SANDRA AMARAL, CHOP, PHILADELPHIA, PA, United States; Isa Ashoor, Boston Children's Hospital, Boston, MA, United States

Background: Little is known about the financial burden of kidney transplantation. Medicare only provides coverage for 80% of costs incurred in the kidney transplant evaluation, surgery, and post-operative recovery for up to 3 years following transplant. This leaves a coverage gap normally supplemented by Medicaid or private insurance plans, but these plans vary widely in their coverage limits and eligibility requirements. Many children receive their kidney transplant from a parent or caregiver which may further compound financial insecurity due to variable out-of-pocket donor expenses.

Objective: To describe the financial burden incurred by families undergoing kidney transplantation both as potential living donors and as caregivers of children with End Stage Kidney Disease (ESKD). Respondents’ lived experiences and input from local advocacy organizations will be used to develop a financial resources toolkit for families of children referred for kidney transplant.

Design/Methods: IRB approval was obtained for a 2-phase study targeting families whose child underwent kidney transplantation at 3 tertiary pediatric hospitals in the states of Massachusetts, Pennsylvania, and Louisiana. Phase 1 is an ongoing financial burden assessment survey for recipient families. Questions were developed with expert opinion and stakeholder input. Surveys include 14 quantitative and 5 qualitative questions and a food insecurity screen. Phase 2 involves focus groups of a sample of families from phase I. Both will conclude by December 31, 2024. To date, 33 surveys were completed with diverse insurance, financial, and racial representation: health insurance type (69% private, 63% Medicaid, 16% Medicare), household annual income (15% < $30K, 15% $31-60K, 18% $61-90K, 18% > $120K), race (78% White, 13% Black, 19% Hispanic), and transplant type (52% living donor). Five surveys were completed by parental living donors; all five had private insurance. Descriptive statistics and focus group qualitative thematic analysis will be utilized in the final analytical plan.