Emotional and Financial Experiences of Kidney Donors over the Past 50 Years

Abstract

Background and objectives Most kidney donors view their experience positively, but some may experience psychosocial and financial burdens. We hypothesized that certain donor characteristics, poor outcome of the recipient, negative perceptions of care, and lack of support may be associated with poor psychosocial outcomes for donors.Design, setting, participants, & measurements The Renal and Lung Living Donors Evaluation Study (RELIVE) examined long-term medical and psychosocial outcomes for kidney donors (at three U.S. transplant centers) who donated between 1963 and 2005. Standardized questionnaires evaluated donor perspectives, recovery time, social support, motivation, financial impact, insurability after donation, and current psychological status. Questionnaires were mailed to 6909 donors.Results Questionnaires were returned by 2455 donors, who had donated 17610 years earlier (range, 5-48 years), a response rate of 36%. Most (95%) rated their overall donation experience as good to excellent. Rating the overall donor experience more negatively was associated with donor complications, psychological difficulties, recipient graft failure, and longer time since donation. Nine percent (n=231) reported one or more of the following poor psychosocial outcomes: fair or poor overall donor experience, financial burden, regret or discomfort with decision to donate, or psychological difficulties since donation. Recipient graft failure was the only predictor for reporting one or more of these poor psychosocial outcomes (odds ratio, 1.77; 95% confidence interval, 1.33 to 2.34). Donors with lower educational attainment experienced greater financial burden. One of five employed donors took unpaid leave; 2% reported health and life insurability concerns.Conclusions Although the majority of donors viewed their overall donation experience positively, almost 1 in 10 donors reported at least one negative consequence related to donation. Recipient graft failure was associated with poor psychosocial outcome, defined as one or more of these negative consequences. Some donors were financially disadvantaged, and some experienced insurance difficulties. Interventions to avoid negative psychosocial and financial consequences are warranted.

Long-term psychosocial outcomes after nondirected donation: A single-center experience

“…22 • Regret: NDDs completed a validated health care decision regret scale; a regret score was computed as described by Brehuat et al 23 • Impact on life: NDDs ranked the impact of donation on 9 specific areas of their life-overall life; and, separately, mental health, spiritual health, relationship with family, relationship with spouse/ partner, appreciation of life, physical health, sense of self-worth, and desire to continue to help others-on a 5-point scale (ranging from "much worse" to "much better"). 22 • Regret: NDDs completed a validated health care decision regret scale; a regret score was computed as described by Brehuat et al 23 • Impact on life: NDDs ranked the impact of donation on 9 specific areas of their life-overall life; and, separately, mental health, spiritual health, relationship with family, relationship with spouse/ partner, appreciation of life, physical health, sense of self-worth, and desire to continue to help others-on a 5-point scale (ranging from "much worse" to "much better").…”

Factors associated with perceived donation-related financial burden among living kidney donors

“…Perceived financial burden was reported by 23% of LKDs in two small, single-center studies from 1986 and 1997 (9, 10) and by 20% of the donors at a single center who donated between 1963 and 2005 (14). However, these studies included exclusively or predominantly patients who underwent an open nephrectomy (15), an operation that required a substantially longer recovery time than the laparoscopic nephrectomy used today (16).…”

Experiences of living kidney donors during the donation process

“…; Jacobs et al . ). Most donors felt high levels of satisfaction with donation, and no pressure to donate or regret about their decision.…”

“…Furthermore donor adherence to follow‐up after donation was challenging for some of the donors including experiences of being financially disadvantaged (Jacobs et al . ; Rodrigue et al . ).…”