Cheryl L. Jacobs

Long-term follow-up of living kidney donors: quality of life after donation

The University of Minnesota has been a strong advocate of living donor kidney transplants. The benefits for living donor recipients have been well documented. The relative low risk of physical complications during donation has also been well documented. Less well understood is the psychosocial risk to donors. Most published reports have indicated an improved sense of well-being and a boost in self-esteem for living kidney donors. However, there have been some reports of depression and disrupted family relationships after donation, even suicide after a recipients death. To determine the quality of life of our donors, we sent a questionnaire to 979 who had donated a kidney between August 1, 1984, and December 31, 1996. Of the 60% who responded, the vast majority had an excellent quality of life. As a group, they scored higher than the national norm on the SF-36, a standardized quality of life health questionnaire. However, 4% were dissatisfied and regretted the decision to donate. Further, 4% found the experience extremely stressful and 8% very stressful. We used multivariate analysis to identify risk factors for this poor psychosocial outcome and found that relatives other than first degree (odds ratio=3.5, P=0.06) and donors whose recipient died within 1 year of transplant (odds ratio=3.3, P=0.014) were more likely to say they would not donate again if it were possible. Further, donors who had perioperative complications (odds ratio=3.5, P=0.007) and female donors (odds ratio=1.8, P=0.1) were more likely to find the overall experience more stressful. Overall, the results of this study are overwhelmingly positive and have encouraged us to continue living donor kidney transplants.

Guidelines for the Psychosocial Evaluation of Living Unrelated Kidney Donors in the United States

Under the auspices of the United Network for Organ Sharing, the American Society of Transplant Surgeons and the American Society of Transplantation, a meeting was convened on May 25, 2006, in Washington, DC, to develop guidelines for the psychosocial evaluation of prospective living kidney donors who have neither a biologic nor longstanding emotional relationship with the transplant candidate. These ‘unrelated’ donors are increasingly often identified by transplant candidates via the Internet, print media and other public appeals. The expansion of living donor kidney transplantation to include significant numbers of donors with little to no preexisting relationship to the candidate has caused concern in the medical community regarding such psychosocial factors as donor psychological status, motivation, knowledge about donation and the potential for undue pressure to donate under some circumstances. Therefore, experts in mental health; psychosocial, behavioral and transplant medicine; and medical ethics met to specify (a) characteristics of unrelated donors that increase their risk for, or serve as protective factors against, poor donor psychosocial outcomes, (b) basic principles underlying informed consent and evaluation processes pertinent to these donors and (c) the process and content of the donor psychosocial evaluation. The meeting deliberations resulted in the recommendations made in this report.

Nondirected Donation of Kidneys from Living Donors

The transplantation of organs from living donors has always involved a balancing of the physical risks and psychological benefits to the donor against the benefits to the recipient. Early in the hi...

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.

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.

Living kidney donor follow-up: State-of-the-art and future directions, conference summary and recommendations

In light of continued uncertainty regarding postkidney donation medical, psychosocial and socioeconomic outcomes for traditional living donors and especially for donors meeting more relaxed acceptance criteria, a meeting was held in September 2010 to (1) review limitations of existing data on outcomes of living kidney donors; (2) assess and define the need for long‐term follow‐up of living kidney donors; (3) identify the potential system requirements, infrastructure and costs of long‐term follow‐up for living kidney donor outcomes in the United States and (4) explore practical options for future development and funding of United States living kidney donor data collection, metrics and endpoints. Conference participants included prior kidney donors, physicians, surgeons, medical ethicists, social scientists, donor coordinators, social workers, independent donor advocates and representatives of payer organizations and the federal government. The findings and recommendations generated at this meeting are presented.

Kidney Transplants From Living Donors: How Donation Affects Family Dynamics

Living donors continue to provide the optimum outcome for kidney transplant recipients, yet information is limited on how donation can affect the donor and his or her family. Questionnaires returned by 524 donors whose donor nephrectomies took place between August 1, 1985 and December 31, 1996 at the University of Minnesota were analyzed to determine if perioperative complications influence their quality of life, among other emotional and lifestyle areas. Results showed that donors have a higher quality of life than the general population, confirming they have an increased self-worth and positive self-esteem. An overwhelming 96% would donate again. However, donation was self-reported as more stressful when complications were experienced (P = .003) and when donors were female (P = .041). Relatives other than immediate family members (extended relatives) were more likely to be among the 4% who said they would not donate again. Available support, financial impact, and relationship changes as a result of donation also were revealed. Relevant results from this larger study are discussed as they relate to how the renal donor and transplant family are affected.

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.

Emotional Well-Being of Living Kidney Donors: Findings From the RELIVE Study

Following kidney donation, short‐term quality of life outcomes compare favorably to US normative data but long‐term effects on mood are not known. In the Renal and Lung Living Donors Evaluation Study (RELIVE), records from donations performed 1963–2005 were reviewed for depression and antidepressant use predonation. Postdonation, in a cross‐sectional cohort design 2010–2012, donors completed the Patient Health Questionnaire (PHQ‐9) depression screening instrument, the Life Orientation Test‐Revised, 36‐Item Short Form Health Survey and donation experience questions. Of 6909 eligible donors, 3470 were contacted and 2455 participated (71%). The percent with depressive symptoms (8%; PHQ‐9 > 10) was similar to National Health and Nutrition Examination Survey participants (7%, p = 0.30). Predonation psychiatric disorders were more common in unrelated than related donors (p = 0.05). Postdonation predictors of depressive symptoms included nonwhite race OR = 2.00, p = 0.020), younger age at donation (OR = 1.33 per 10 years, p = 0.002), longer recovery time from donation (OR = 1.74, p = 0.0009), greater financial burden (OR = 1.32, p = 0.013) and feeling morally obligated to donate (OR = 1.23, p = 0.003). While cross‐sectional prevalence of depression is comparable to population normative data, some factors identifiable around time of donation, including longer recovery, financial stressors, younger age and moral obligation to donate may identify donors more likely to develop future depression, providing an opportunity for intervention.

Satisfaction With Life Among Living Kidney Donors: A RELIVE Study of Long-Term Donor Outcomes

Background Little is known about living kidney donors’ satisfaction with life (SWL) after donation. We compared donors’ SWL to previously reported general population samples and investigated predictors of donors’ SWL. Methods Three transplant centers mailed questionnaires to assess SWL, physical health, optimism, retrospective evaluation of the donation experience, and demographic characteristics to living kidney donors’ homes between 2010 and 2012. Two thousand four hundred fifty-five donors who were between 5 and 48 years from the time of their donor surgery completed the questionnaire. Results Eighty-four percent of donors were satisfied with their lives (scores≥20 on the Satisfaction With Life Scale). Donors were at least as satisfied with their lives as previously reported general population samples. After adjusting for physical health, optimism, and demographics, donors’ SWL was significantly associated with donors’ recalled experience of donation. Social support and positive effects of the donation on relationships predicted greater SWL. Financial difficulties associated with donation and longer recovery times predicted lower SWL. Recipient outcomes were not significantly related to donor SWL. Discussion Limitations include the lack of predonation SWL data, potential bias in postdonation SWL because of the situational context of the questionnaire, and a sample that is not representative of all U.S. living kidney donors. Nonetheless, strategies focused on improving the donation experience, particularly related to recovery time, financial issues, and social support, may result in greater SWL after donation.