The Health and Experiences of Living Donors Participating in Kidney Donation Chains: A Preliminary Study.

Abstract

Purpose. Kidney chain programs allow willing living kidney donors to donate for either their intended recipients even if incompatible (directed donation) or society as a whole (non-directed donation). Understanding the unique experiences of living donors participating in kidney chains is crucial for working with potential chain donors. Methods. We conducted a mixed methods study of living donors participating in chains (8 directed donors, 4 non-directed donors) including administering the SF-36 survey to assess their post-donation general health and quality-of-life and conducting in-depth qualitative interviews about their motivation and experiences donating. On average, the chain donations had occurred 3.4 years (range 1-6 years) prior to the interviews. Directed donors were spouses (n=4), children (n=2), a sibling, and an in-law of their intended recipients. Results. Three of the four non-directed donors were motivated to become a donor by past experiences with health tragedies in their social networks. Seven of the twelve donors spoke about the role faith or humanist ideals played in their willingness to consider chain donation. Directed donors saw becoming part of a chain as a last resort, while non-directed donors saw chains as a strategic way to leverage the value of their kidney for a greater good. After donation, donors' general health, as assessed by the SF-36 Mental Composite Score (MCS) and Physical Composite Score (PCS), were within population norms for healthy individuals (mean=50). However, the ranges for MCS scores such as emotional well-being (64-96), limitations due to emotional well being (33-100), and energy (45-95) were wide, indicating high variation in perceived post-donation experiences across individuals. In the qualitative interviews, some donors reported that they had unanswered questions and experienced a post-operative let down (n=4) after donation. Post-donation, half of the donors were still in contact with their chain recipients (n=6). Four of the six unconnected donors experienced a post-operative let down. Conclusion. Since this preliminary study revealed high levels of variability in living donors' health and emotional experiences after chain donations, additional research could determine what unique educational needs chain donors have. Maintaining ongoing connections within chains may be helpful in adjusting post-donation.