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

Short-term studies have demonstrated that nondirected donors (NDDs) have psychosocial outcomes that are similar to donors who donate directly, but long-term studies have not been done. NDDs at our center were surveyed regarding motivation; support during donation; stress related to donation; regret; financial resources used for donation; preferences about communication with the recipient; and cost reimbursement. Of 100 NDDs who donated at our center in the last 20 years, 95 remain in contact with us, and 77 responded to our survey (mean ± standard deviation [SD] 6.7 ± 4 years postdonation). The most common motivation for donation was the desire to help another (99%). Many NDDs received support from family, friends, and employers. NDDs voiced stress about the possibility of recipient kidney rejection, physical consequences to themselves, and financial burden. Only one donor expressed regret. Almost half wanted some recipient information at donation; 61% preferred routine recipient status updates; 56% believed meeting the recipient should occur at any mutually agreeable time; and 55% endorsed reimbursement for expenses. Stressors for NDDs are analogous to those of directed donors; NDDs prefer having some information about the recipient and prefer to be given a choice regarding the timing for communication with the recipient. NDDs supported donation being financially neutral.

Return to normal activities and work after living donor laparoscopic nephrectomy.

Transplant programs inform potential donors that they should be able to return to normal activities within ~2 weeks and to work by 6 weeks after laparoscopic nephrectomy. We studied actual time. Between 10/2004 and 9/2014, 911 donors having laparoscopic nephrectomy were surveyed 6 months post-donation. Surveys asked questions specific to their recovery experience, including time to return to normal activities and work and a description of their recovery time relative to pre-donation expectations. Of the 911, 646 (71%) responded: mean age at donation was 43.5±10.6 years; 65% were female, 95% were white, 51% were biologically related to their recipient, and 83% reported education beyond high school. Of the 646 respondents, a total of 35% returned to normal activities by 2 weeks post-donation; 79% by 4 weeks post-donation; 94% by 5-6 weeks; however, 6% took >6 weeks. Of the 646, 551 (85%) were working for pay; of these, mean time to return to work was 5.3±2.8 weeks; median, 5 weeks. Of the 551, a total of 14% returned to work in 1-2 weeks, 46% by 3-4 weeks, and 76% by 5-6 weeks. Importantly, 24% required >6 weeks before returning to work with the highest rates for donors in manual labor or a skilled trade. Significantly longer return to work was reported by females (vs males; P=.01), those without (vs those with) post-high school education (P=.010, those with longer hospital stay (P=.01), and those with a postoperative complication (P=.02). Of respondents, 37% described their recovery time as longer than expected. During the donor informed consent process, additional emphasis on realistic expectations around recovery to baseline activities and return to work is warranted.

Outcome disparities in acute coronary syndrome patients from rural versus urban settings: A narrative review of causes, and strategies to minimize them.

Acute coronary syndrome (ACS) remains an important cause of morbidity and mortality worldwide. Critical elements of improving outcomes in ACS patients include timely access to acute care including prompt revascularization if indicated, and subsequent ongoing secondary prevention and risk factor modification, ideally with cardiovascular specialists. It is being increasingly realized that ACS patients from rural settings suffer from inferior outcomes compared to their urban counterparts due to factors such as delayed diagnosis, delayed access to acute care, and less accessibility to specialized follow up. This narrative review will examine the importance of timely access to care in ACS patients, particularly in ST-elevation myocardial infarction; how barriers in access to care affects outcomes in various rural populations; and strategies that have been shown to improve such access, and therefore hopefully achieve more equitable health outcomes compared to patients who live in urban settings.

A hypomorphic Artemis human disease allele causes aberrant chromosomal rearrangements and tumorigenesis.

The Artemis gene encodes a DNA nuclease that plays important roles in non-homologous end-joining (NHEJ), a major double-strand break (DSB) repair pathway in mammalian cells. NHEJ factors repair general DSBs as well as programmed breaks generated during the lymphoid-specific DNA rearrangement, V(D)J recombination, which is required for lymphocyte development. Mutations that inactivate Artemis cause a human severe combined immunodeficiency syndrome associated with cellular radiosensitivity. In contrast, hypomorphic Artemis mutations result in combined immunodeficiency syndromes of varying severity, but, in addition, are hypothesized to predispose to lymphoid malignancy. To elucidate the distinct molecular defects caused by hypomorphic compared with inactivating Artemis mutations, we examined tumor predisposition in a mouse model harboring a targeted partial loss-of-function disease allele. We find that, in contrast to Artemis nullizygosity, the hypomorphic mutation leads to increased aberrant intra- and interchromosomal V(D)J joining events. We also observe that dysfunctional Artemis activity combined with p53 inactivation predominantly predisposes to thymic lymphomas harboring clonal translocations distinct from those observed in Artemis nullizygosity. Thus, the Artemis hypomorphic allele results in unique molecular defects, tumor spectrum and oncogenic chromosomal rearrangements. Our findings have significant implications for disease outcomes and treatment of patients with different Artemis mutations.

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.

Bevacizumab and albumin-bound paclitaxel treatment in metastatic breast cancer.

BACKGROUND: Miller et al demonstrated that the combination of bevacizumab and paclitaxel has significant activity in metastatic breast cancer (MBC). Because albumin-bound paclitaxel has been shown to have less toxicity, a better tumor delivery, and possibly better response for MBC, we combined it with bevacizumab to treat women with MBC. PATIENTS AND METHODS: This is a retrospective analysis. Billing records from March 2005 through December 2006 were reviewed to identify all patients treated with a combination of albumin-bound paclitaxel/bevacizumab. A total of 40 women were identified. They received a minimum of 2 courses. Patients with measurable disease were monitored for response using Response Evaluation Criteria in Solid Tumors. Women with bone-only disease were monitored with positron emission tomography (PET)/computed tomography/magnetic resonance imaging and tumor markers. All response data were confirmed by independent review. RESULTS: Of 33 women with measurable disease, 16 had objective responses to the albumin-bound paclitaxel/bevacizumab regimen (3 complete responses and 13 partial responses) for an overall response rate (ORR) of 48.5%. Median time to progression for responders was 128 days. Another 5 women had stable disease (SD) with a median duration of 135 days. Of 7 patients with bone-only disease, 2 had almost complete resolution of PET activity and 4 had SD (median, 148 days). Toxicity was acceptable with fatigue, neuropathy, pain, and hypertension being the most common complaints. CONCLUSION: In our limited series of women with advanced, heavily pretreated MBC treated with albumin-bound paclitaxel/bevacizumab, we saw a 48.5% ORR. The regimen was well tolerated. Randomized studies are needed to confirm efficacy and safety of this combination in treating breast cancer.

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.

Life insurance for kidney donors: another update.

BACKGROUND: Previous studies concluded that healthy kidney donors should be able to obtain life insurance at standard rates. However, we have become aware of a few donors for whom this was not the case. Clearly, this important issue needs to be readdressed. METHODS: To investigate how American life insurance companies currently view and treat living kidney donors, we mailed a survey to the medical directors of 70 U.S. life insurance companies in the winter of 2001; we included the 20 largest companies ranked by assets. RESULTS: Thirty-eight companies, including 16 of the top 20, chose to participate. All of them said they would offer life insurance to a healthy kidney donor and only one believed it might raise the premium. Only one company thought that kidney donation might adversely affect longevity, and a majority of the companies did not consider healthy donors to be at increased risk for future medical problems. CONCLUSIONS: These data suggest that most life insurance companies are still willing to insure healthy kidney donors at standard rates. Nevertheless, occasional donors may encounter difficulty when applying for life insurance. When this occurs, transplant centers should be prepared to help the donor obtain insurance.

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.

Financial considerations in living organ donation.

The shortage of cadaveric organs and increased success of living donor transplantation support the use of living organ donors. Clinical social workers have the opportunity to explore a variety of donor-specific issues when performing psychosocial evaluations of living donors, including motivation, psychological stability, and personal and family consequences of donation, as well as the direct and indirect financial consequences faced by living donors. Although most donor-related medical costs are covered, other associated expenses are not reimbursable and may put donors at risk for financial hardship. Out-of-pocket expenses also serve as a disincentive to donate for some volunteers. During the evaluation process, healthcare professionals should openly discuss how surgery, recovery, and any potential complications might impact prospective donors' financial situation. Donors can then decide whether they are able to realistically handle the costs of donation. We present the financial dilemmas experienced by many living donors and highlight efforts that have been made to deal with them.

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.

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.

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.

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.