Living Kidney Donors Who Develop Kidney Failure: Excerpts of Their Thoughts

Abstract

Background: Psychosocial data about living kidney donors have been collected for almost 5 decades now. To date, however, no study has provided any psychosocial follow-up of donors who developed a serious health problem such as end-stage renal disease (ESRD). Methods: Donors who developed ESRD were invited to participate in a qualitative interview if they met one or both of the inclusion criteria: (1) developed ESRD within 10 years of donating and/or (2) lacked health insurance at the time of donation. We contacted 38 individuals who met these criteria, and 22 participated (58%). Two were subsequently excluded from analysis. Results: Twenty qualitative interviews were analyzed. Five findings are described: (1) donors describe the decision-making process as spontaneous and fast; (2) donors describe lack of appreciation for the need for post-donation self-care; (3) donors do not regret donating despite the adverse outcome; (4) donors advise future donors to have in place emotional and physical support post donation; and (5) donors appreciate the opportunity to tell their story from being a living donor to living with ESRD, which virtually all perceive as 2 separate unrelated events. Conclusions: Most donors are positive about their donation decision and experience and would donate again, despite developing ESRD themselves. They propose some important changes to the decision-making and informed-consent processes. Our data are reassuring regarding lack of donor regret, but highlight the need for living donor transplant programs to ensure that living donors understand their long-term risks and receive appropriate life-long follow-up care to minimize these risks.

Outcomes for individuals turned down for living kidney donation

“…Given follow‐up time of only several years, most donors in this cohort would not have yet had time to experience long‐term health consequences, which might change their assessment of whether the donation decision was a good one. On the other hand, other studies have revealed that donors rarely regret their decision to donate . Finally, the self‐assessment about changes in life as a consequence of being accepted or turned down for kidney donation was not a validated measure.…”

“…On the other hand, other studies have revealed that donors rarely regret their decision to donate. 48,49 Finally, the self-assessment about changes in life as a consequence of being accepted or turned down for kidney donation was not a validated measure.…”

Psychosocial consequences of living kidney donation: a prospective multicentre study on health-related quality of life, donor–recipient relationships and regret

“…The donor's perception on donation consequences for themselves, the recipient and their relationship before and after transplantation has mostly been described in retrospective or qualitative studies [12][13][14][15][16]. Furthermore, the presence or absence of regret about the donation decision has mostly been assessed using a single ad hoc question which has indicated that a small subgroup of donors experiences regret [13,[17][18][19]. Previous research assessing decisional regret about healthcare decisions in other patient populations showed that more regret was related to poorer HRQoL.…”

Unspoken ambivalence in kinship obligation in living donation

“…The full methodology is presented elsewhere. 7 In brief, we conducted semistructured interviews with living donors who developed ESRD after donating to a first-degree relative other than parent-to-child. Interviews were conducted by medical students and overseen by a physician-philosopher (L.F.R.)…”

“…Coding disagreements were reconciled with high intercoder reliability (>90%). 8 Participants are identified by gender (F, female; M, male), by the group from which they were recruited (T ¼ under 10 years; I ¼ uninsured), and by a unique number based on our recruiting method (for full details, see the study by Halverson et al 7 ).…”