Understanding Patients’ and Living Donors’ Kidney Paired Donation Educational Experiences and Recommendations for Improvement

Abstract

Introduction Educating potential kidney patients and living donors about the risks and benefits of kidney paired donation to ensure they make informed decisions is complex. This study aimed to increase understanding of patients’ and donors’ decision-making about donation, the educational content they received, and their recommendations for educational improvements. Method We conducted a mixed methods study, including semistructured interviews and quantitative surveys, with 43 participants (25 living donors; 18 kidney recipients). Findings Participants reported that the benefits of paired donation motivated them to participate (ie, helping multiple people, receiving a transplant sooner, flexible timing of donation). Although deciding to participate in paired donation was a systematic, logical, and carefully considered process for some. For most, it was a quickly made, often emotion-based decision. Paired donation educational content on different topics varied, with recipients reporting receiving less information than donors about donor protections and processes to ameliorate the challenges faced, such as broken swaps and chains, and delays in matching. Those who faced challenges requested more information about donor protections and support during and after paired donation. Although many acknowledged their transplant coordinators’ helpfulness, participants also recommended being more proactive in learning about kidney paired donation and speaking to former donors and recipients beforehand. Discussion Standardized, health literate educational content addressing the gaps and variability in education received may help increase paired donation informed decision-making.