The RELIVE study is a poor substitute for comprehensive, mandatory living donor follow-up, but in the US where the healthcare system is capitalistic and money buys political influence, RELIVE is all we’ve got.
So, with a 36% response rate (dismal), the researchers found that 1 in 10 (10%) of living kidney donors report at least one negative outcome of donating, including: “fair or poor overall donor experience, financial burden, regret or discomfort with decision to donate, or psychological difficulties since donation”
“Rating the overall donor experience more negatively was associated with donor complications, psychological difficulties, recipient graft failure, and longer time since donation.”
I find that last bit most interesting.
- Are the folks who’ve donated more recently still on the “high” from donating?
- Are those same folks not ready to admit their experience wasn’t awesome? (Since the public perception is that LDs skip merrily off into the sunset, it can be difficult for LDs to admit anything to the contrary)
- As folks get further away from their donation, are they experiencing more health and psychosocial issues?
- We know transplants aren’t cures, so is it possible that the LDs further away from donating are more likely to have seen their recipients’ health decline or even die?
I have no conclusions, and neither does RELIVE, but the fact that LKD’s assessment of their living donor experience decline over time could be significant. It’s unfortunate we don’t have any long-term follow-up to know for sure.
Jacobs, C., Gross, C., Messersmith, E., Hong, B., Gillespie, B., Hill-Callahan, P., Taler, S., Jowsey, S., Beebe, T., Matas, A., Odim, J., Ibrahim, H., & , . (2015). Emotional and Financial Experiences of Kidney Donors over the Past 50 Years: The RELIVE Study Clinical Journal of the American Society of Nephrology, 10 (12), 2221-2231 DOI: 10.2215/CJN.07120714