Financial Burden Borne by Laparoscopic Living Kidney Donors.

BACKGROUND: Living kidney donors have donation-related out-of-pocket costs (direct costs) and/or ongoing daily expenses while losing income (indirect costs). Yet there is little information about how much of a subjective burden these constitute for the donors. METHODS: From December 2003 through December 2014, we surveyed donors 6 months postdonation to determine their financial burden related to donation (on a scale of 1 to 10) and what resources were used to cover expenses. RESULTS: Of 1136 surveyed, 796 (70%) responded. Among respondents, mean age at donation was 43.6 ± 10.6 years, 64% were women, 96% were white, and 53% were related by blood to their recipient. Overall, 26% scored their financial burden as 5 or higher; 8% scored it as 8 or higher. Increased expenses were associated with a higher reported burden; however, significant burden was reported by some with no out-of-pocket expenses (presumably due to lost wages and continuing expenses). The burden was scored as 5 or higher by 27% of those employed outside the home (n = 660), 15% homemakers, 13% retirees, 40% students; 28% unemployed; and 26% whose occupation was unknown. Over half (51%) of those receiving a local or (means-tested) national grant still reported moderate to severe burden. Besides grants, donors used a variety of sources to help offset expenses: dipped into savings, borrowed from friends or family, took out a loan, and/or had a fundraiser. Those with the highest burden reported using the most additional sources. CONCLUSIONS: Donors should not have to incur costs or a financial burden to donate; the transplant community should strive to make donation financially neutral.

Emotional and Financial Experiences of Kidney Donors over the Past 50 Years: The RELIVE Study.

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 17 ± 10 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.

The nondirected live-kidney donor: ethical considerations and practice guidelines: A National Conference Report.

BACKGROUND: The success of kidney transplantation from a genetically unrelated living spouse or friend has influenced transplant physicians to consider the requests of individuals wishing to volunteer to be a kidney donor who have no intended recipient specified. Representatives of the transplant community gathered in Boston, MA, on May 31, 2001, to deliberate on the experience of live kidney donation from such volunteers, currently termed nondirected donors (NDD). OBJECTIVE OF CONFERENCE PARTICIPANTS: The objective of the conference was to recommend ethical and practice guidelines for health care professionals considering the transplantation of a kidney from a live NDD. CONFERENCE PARTICIPANTS: This conference was convened under the sponsorship of The National Kidney Foundation, with representation from The American Society of Transplantation and The American Society of Transplant Surgeons, The American Society of Nephrology, The United Resource Networks, The United Network for Organ Sharing, The Association of Organ Procurement Organizations, The National Institutes of Health, and The Division of Transplantation of the Health Resources and Services Administration (see Appendix). CONFERENCE REPORT: The suggested content of screening interviews, which provide information regarding the donation process, elicits pertinent medical and psychosocial history, and assesses NDD motivation are presented in this report. Approaches to identifying the center that would evaluate the suitability of the NDD, to performing the kidney recovery, and to selecting the NDD recipient are also proposed. Other ethical issues such as the use of prisoners as an NDD, compensation for the NDD, media involvement, and communication between the NDD and recipient are discussed. CONCLUSION: The willingness of health care professionals to consider NDD volunteers is driven by the compelling need to provide organs for an ever-expanding list of patients awaiting a kidney transplant. However, the psychological impact and emotional reward of donation has yet to be determined for NDD who may not have any relationship to the recipient or knowledge of the recipient's outcome. Transplant centers that accept NDD should document an informed consent process that details donor risks, assures donor safety, and determines that the goals and expectations of the NDD and the recipient can be realized.

Psychosocial and socioeconomic issues facing the living kidney donor.

At the 2010 Conference on Living Kidney Donor follow-up, a workgroup was convened to comment on the state of the evidence in 4 broad areas: (a) health-related quality of life postdonation; (b) donors' financial and economic concerns; (c) outcomes issues specific to newer areas of donation, namely, kidney exchange and anonymous (directed and nondirected) donation; and (d) the role of informed consent in relation to postdonation psychosocial outcomes. The workgroup sought to offer recommendations regarding research priorities for the next decade and data collection strategies to accomplish the needed research. The workgroup concluded that there has been little consideration of the nature or predictors of any long-term psychosocial outcomes in living donors. In some areas (eg, kidney exchange and anonymous donation), there is limited information on outcomes even in the early aftermath of donation. Across all 4 psychosocial areas, prospective studies are needed that follow donors to examine the course of development and/or resolution of any donation-related difficulties. The formation of a national registry to routinely collect psychosocial follow-up data may be an efficient strategy to monitor donor outcomes in both the short- and long-term years after donation.

The beauty of the gift: the wonder of living organ donation.

In a recent opinion piece, Nancy Scheper-Hughes provides a sweeping indictment of living organ donation, even in cases where the gift is directed to a close family member. She describes the process with caustic powerful phrases such as "sacrificial violence" and a "call to 'self-sacrifice.'" She concludes that living organ donation "should be consigned to a back seat as an exceptional back-up to deceased donation." But her conclusions are based on anecdotes and data that are not representative of donor practice and motivation in the United States and other developed countries. At reputable transplant centers great care is taken to identify genuine volunteers and to protect their interests. Under these circumstances living organ donation remains a generally safe and beneficial procedure for the donor as well as the recipient, and a wonderful example of the goodness of people.

Evolution of a nondirected kidney donor program: lessons learned.

From October 1, 1997 through November 30, 2003, the University of Minnesota received 362 inquiries from potential NDDs. Of these, 53 (15%) then underwent partial or full donor evaluation at our transplant center. Of these 53 potential NDDs, 24 have been accepted (23 donated, and one donation is pending), 23 were denied (15 for medical reasons, 8 for psychosocial reasons), and 6 chose not to pursue donation. Most of our potential NDDs were motivated by altruistic reasons. Their decision-making process was not impulsive or instantaneous, but rather rational and deliberate. They were self-educated about donation before contacting our transplant center. After donation, all 23 of our NDDs said they were glad they donated and were grateful for the opportunity to help another. Many desired to become involved in the transplant community by promoting donation. All NDDs who heard from their recipient appreciated the contact and the chance to learn how the recipient was doing posttransplant. An NDD program clearly mandates a dedicated donor team and additional time and resources, given the high number of inherent practical, logistical, and ethical issues. Our protocol has been a work in progress and continues to evolve with our ever-growing experience. Transplant centers interested in using NDDs must develop NDD protocols to address specific issues and must examine their available staffing and resources.

Twenty-two nondirected kidney donors: an update on a single center's experience.

At the University of Minnesota, we have defined 'nondirected donation' as organ donation by a volunteer who offered to donate an organ to anyone on the cadaver waiting list. From October 1, 1997, through October 31, 2003, we have had 360 inquiries about nondirected donation, have completed 42 detailed nondirected donor (NDD) evaluations for kidney donation, and have performed 22 NDD transplants. We herein review our program policies and how they have evolved, describe our evaluation and the motivation of our potential donors, summarize the outcome of NDD transplants, and raise issues requiring further attention and study. Our experience continues to support nondirected donation for kidney transplants.