*Purpose: Known socioeconomic disparities in transplant referral and evaluation exist in adults with end-stage kidney disease, but little is known about the financial burden that caregivers of children with end-stage kidney disease experience as part of the transplant process. Since financial stressors may pose a source of inequity in access to transplant, we conducted a survey study to identify and improve understanding of the financial barriers faced by caregivers of children with end stage kidney disease.

*Methods: We conducted a literature review and interviewed members of the transplant evaluation team at our single center, including social work and an insurance specialist, to identify salient financial barriers experienced by caregivers of children undergoing kidney transplant evaluation. Based on this information, we developed a survey of 31 mixed qualitative and quantitative questions. Participants were asked to rank the impact of direct and indirect financial challenges of the kidney transplant process from 1-10 with 1 indicating “no impact at all” and 10 indicating “very strong impact.” Participants were also asked yes or no questions about coping with financial pressures. Two survey questions allowed caregivers to leave an open-ended comment. We recruited caregivers of children who were referred for kidney transplant evaluation or were post-transplant within three years of enrollment date. Participants were recruited by phone and in person from our Nephrology Division. Surveys were completed through a secure REDCap link.

*Results: We approached 57 caregivers and 28 (49%) completed the survey. Among 28 participants, 75% were female. 64.3% of our participants’ children were white. The median distance our surveyed families lived from the center was 20-49 miles and median household income before taxes was $40,000-$79,000. 39.3% of our participants said that they struggled to pay basic living and medical expenses in the last 12 months. The top three endorsed stressors (participants ranked impact an 8,9, or 10) were missing work due to the need to take care of a child (53.5%), not pursuing promotions or higher-paying jobs because new work expectations might interfere with caring for a child (39.3%), and losing or needing to quit a job to care for a child (32.1%).

*Conclusions: Caregivers of children with end-stage kidney disease in our single center endorsed a high burden of financial stress, including stress related to employment and childcare. Our survey took only 5-10 minutes and was easy to conduct electronically. Further study is warranted in other centers to assess generalizability. Nevertheless, our findings highlight an opportunity for advocacy to promote public health policies that reduce financial strain on families to ensure equitable and timely access to transplant, the optimal treatment, for children with end-stage kidney disease.

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