Session Time: 3:15pm-4:00pm
Presentation Time: 3:30pm-4:00pm
*Purpose: Studies on motivations and decision-making processes of living donors have previously identified recipient relationship, fear of loss and altruism as important modifying factors of donor behavior. No studies have evaluated the role of human leukocyte antigen (HLA) status and its impact on living donor decision-making.
*Methods: In this qualitative study, the first author (ELW) conducted semi-structured in-depth interviews to characterize donor decision-making. The cohort of donors came from a larger, multi-institutional study (between UCLA and Stanford) evaluating quality of life among HLA-identical donor and recipient pairs. A total of 117 sibling pairs who underwent kidney donation/transplantation at UCLA between 11/2013 and 7/2019 were screened, 36 of whom were HLA-identical. A total of 10 participants completed demographic questionnaires and a semi-structured in-depth interview. Transcripts were reviewed by ELW with input from SG and JV. The qualitative methodology employed was content analysis in (Atlas Ti7 Version 7.5.18).
*Results: Most participants were female (6), White/Not Hispanic (6), young (mean age 49 at time of donation), had high socioeconomic status (most with some college or higher, mean income $77,000) and mean time since donation of 3.5 years. For most donors (only one of whom did not initiate the donation conversation), the decision was often immediate and obvious (eg. “it was a no-brainer.”) Drivers included the fact they were siblings/family (even when endorsing not being “close”), witnessing their recipient’s decline (particularly for those on dialysis) and a drive to prolong life. Empathy for poor quality of life on dialysis and fear of dialysis (for preemptive recipients) were common. HLA-matching status was important to donors: “because we had such a good match he could potentially have 30 years with my kidney which could get him through the rest of his life. So keep[ing] him off of dialysis – that’s kind of priceless.” Most expressed gratitude for the experience and affirmed their choice to donate. Many donors negatively recalled their postoperative recovery in non-private (or PACU) rooms, but many experienced a positive psychological boost, felt proud of their donation and endorsed making changes to their health routine as a result of donation (eg. exercising more, eating a better diet and staying hydrated).
*Conclusions: Decision to donate is driven by familial status, empathy, fear of dialysis, fear of loss and desire to prolong life. HLA-matching status may play an important role in how donors perceive the impact of their donation.
To cite this abstract in AMA style:Wood EL, George S, Kogut N, Lum E, Veale J. Decision-Making, Motivations and the Donation Experience among HLA-Identical Living Kidney Donors at UCLA – A Qualitative Study [abstract]. Am J Transplant. 2020; 20 (suppl 3). https://atcmeetingabstracts.com/abstract/decision-making-motivations-and-the-donation-experience-among-hla-identical-living-kidney-donors-at-ucla-a-qualitative-study/. Accessed November 29, 2020.
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