Background: Little is known about the experiences of individuals who begin living kidney donor (LKD) evaluation but are turned down due to ineligibility. We assessed the rate and reasons for ineligibility of these individuals, their feelings and experiences, and follow-up care.

Methods: We conducted a prospective, longitudinal study of potential LKDs at 3 centers. Participants completed surveys and two semi-structured interviews (evaluation and two weeks post notification of eligibility status). We thematically coded the interviews to elucidate their reactions to being turned down as donors.

Results: Of 131 individuals who began in-person evaluation (overall response rate: 83%), 25 (20%) were ineligible. Eighteen ineligible LKDs (72%) are included in this analysis; 7 did not complete a second interview. Participants were 39% male, 83% white; mean age was 44 years. Reasons for ineligibility include renal masses (22%), renal stones (22%), complex anatomy (11%), low renal function (11%), positive crossmatch (11%), other medical reasons (17%), and psychosocial concerns (6%). Fourteen were disappointed: “I[hellip]left quite positive that I would be a donor. So I was very disappointed when I got the phone call.” Five were grateful to find out more about their health; one diagnosed with renal cell carcinoma said, “It was definitely God's way of maybe saving me.” Five were surprised: “It was kind of like a bomb went off…Everybody was just kind of shell-shocked.” Three participants did not understand their reason for ineligibility, 2 of whom contested the transplant team's decision. Of the 15 individuals with a newly diagnosed medical condition, 5 sought follow-up care, and 6 planned to soon. Another 4 said they would not seek follow-up care, including 2 who did not do so because of financial concerns. Limitation: Those who were dissatisfied with the center's decision may have been less likely to complete our study.

Conclusion: One-fifth of individuals who began in-person evaluation were medically ineligible, with renal masses among the most common reasons. While some were disappointed that they could not donate, they appreciated the new health information. LKD evaluation consent forms should discuss the possibility and potential consequences of donor ineligibility. Transplant teams should also contact ineligible donors to ensure their understanding and to offer support and further referrals.

CITATION INFORMATION: Dobosz D, Thiessen C, Gannon J, Li S, Kennedy K, Gray D, Mussell A, Gordon E, Kulkarni S, Reese P. Ineligible: Attitudes and Follow-Up of Individuals Ruled Out of Living Kidney Donation. Am J Transplant. 2016;16 (suppl 3).

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