Mood, body image, fear of kidney failure, life satisfaction, and decisional stability following living kidney donation: Findings from the KDOC study.

Prior studies demonstrate that most living kidney donors (LKDs) report no adverse psychosocial outcomes; however, changes in psychosocial functioning at the individual donor level have not been routinely captured. We studied psychosocial outcomes predonation and at 1, 6, 12, and 24 months postdonation in 193 LKDs and 20 healthy controls (HCs). There was minimal to no mood disturbance, body image concerns, fear of kidney failure, or life dissatisfaction, indicating no incremental changes in these outcomes over time and no significant differences between LKDs and HCs. The incidence of any new-onset adverse outcomes postdonation was as follows: mood disturbance (16%), fear of kidney failure (21%), body image concerns (13%), and life dissatisfaction (10%). Multivariable analyses demonstrated that LKDs with more mood disturbance symptoms, higher anxiety about future kidney health, low body image, and low life satisfaction prior to surgery were at highest risk of these same outcomes postdonation. It is important to note that some LKDs showed improvement in psychosocial functioning from pre- to postdonation. Findings support the balanced presentation of psychosocial risks to potential donors as well as the development of a donor registry to capture psychosocial outcomes beyond the mandatory 2-year follow-up period in the United States.

Vascularized Composite Allograft Donation and Transplantation: A Survey of Public Attitudes in the United States.

Vascularized composite allograft (VCA) transplantation has emerged as a groundbreaking surgical intervention to return identity and function following traumatic injury, congenital deformity, or disfigurement. While public attitudes toward traditional organ/tissue donation are favorable, little is known about attitudes toward VCA donation and transplantation. A survey was conducted of 1485 U.S. residents in August 2016 to assess VCA donation attitudes. Participants also completed the Revised Health Care System Distrust Scale. Most respondents were willing to donate hands/forearms (67.4%) and legs (66.8%), and almost half (48.0%) were willing to donate the face. Three-quarters (74.4%) of women were willing to donate the uterus; 54.4% of men were willing to donate the penis. VCA donation willingness was more likely among whites and Hispanics (p < 0.001), registered organ/tissue donors (p < 0.001), and those with less health care system distrust (p < 0.001) and media exposure to VCA transplantation (p = 0.003). Many who opposed VCA donation expressed concerns about psychological discomfort, mutilation, identity loss, and the reaction of others to seeing familiar body parts on a stranger. Attitudes toward VCA donation are favorable overall, despite limited exposure to VCA messaging and confusion about how VCA donation occurs. These findings may help guide the development and implementation of VCA public education campaigns.

Health Insurance Trends in United States Living Kidney Donors (2004 to 2015).

Some transplant programs consider the lack of health insurance as a contraindication to living kidney donation. Still, prior studies have shown that many adults are uninsured at time of donation. We extend the study of donor health insurance status over a longer time period and examine associations between insurance status and relevant sociodemographic and health characteristics. We queried the United Network for Organ Sharing/Organ Procurement and Transplantation Network registry for all living kidney donors (LKDs) between July 2004 and July 2015. Of the 53 724 LKDs with known health insurance status, 8306 (16%) were uninsured at the time of donation. Younger (18 to 34 years old), male, minority, unemployed, less educated, unmarried LKDs and those who were smokers and normotensive were more likely to not have health insurance at the time of donation. Compared to those with no health risk factors (i.e. obesity, smoking, hypertension, estimated glomerular filtration rate <60, proteinuria) (14%), LKDs with 1 (18%) or ≥2 (21%) health risk factors at the time of donation were more likely to be uninsured (p < 0.0001). Among those with ≥2 health risk factors, blacks (28%) and Hispanics (27%) had higher likelihood of being uninsured compared to whites (19%; p < 0.001). Study findings underscore the importance of providing health insurance benefits to all previous and future LKDs.

Deceased Donor Intervention Research: A Survey of Transplant Surgeons, Organ Procurement Professionals, and Institutional Review Board Members.

Innovative deceased donor intervention strategies have the potential to increase the number and quality of transplantable organs. Yet there is confusion over regulatory and legal requirements, as well as ethical considerations. We surveyed transplant surgeons (n = 294), organ procurement organization (OPO) professionals (n = 83), and institutional review board (IRB) members (n = 317) and found wide variations in their perceptions about research classification, risk assessment for donors and organ transplant recipients, regulatory oversight requirements, and informed consent in the context of deceased donor intervention research. For instance, when presented with different research scenarios, IRB members were more likely than transplant surgeons and OPO professionals to feel that study review and oversight were necessary by the IRBs at the investigator, donor, and transplant center hospitals. Survey findings underscore the need to clarify ethical, legal, and regulatory requirements and their application to deceased donor intervention research to accelerate the pace of scientific discovery and facilitate more transplants.

Financial Neutrality for Living Organ Donors: Reasoning, Rationale, Definitions, and Implementation Strategies.

In the United States, live organ donation can be a costly and burdensome undertaking for donors. While most donation-related medical expenses are covered, many donors still face lost wages, travel expenses, incidentals, and potential for future insurability problems. Despite widespread consensus that live donors (LD) should not be responsible for the costs associated with donation, little has changed to alleviate financial burdens for LDs in the last decade. To achieve this goal, the transplant community must actively pursue strategies and policies to eliminate unreimbursed out-of-pocket costs to LDs. Costs should be more appropriately distributed across all stakeholders; this will also make live donation possible for people who, in the current system, cannot afford to proceed. We propose the goal of LD "financial neutrality," offer an operational definition to include the coverage/reimbursement of all medical, travel, and lodging costs, along with lost wages, related to the act of donating an organ, and guidance for consideration of medical care coverage, and wage and other expense reimbursement. The intent of this report is to provide a foundation to inform discussion within the transplant community and to advance initiatives for policy and resource allocation.

Direct and Indirect Costs Following Living Kidney Donation: Findings From the KDOC Study.

Some living kidney donors (LKDs) incur costs associated with donation, although these costs are not well characterized in the United States. We collected cost data in the 12 mo following donation from 182 LKDs participating in the multicenter prospective Kidney Donor Outcomes Cohort (KDOC) Study. Most LKDs (n = 167, 92%) had one direct cost or more following donation, including ground transportation (86%), health care (41%), meals (53%), medications (36%), lodging (23%), and air transportation (12%). LKDs missed 33 072 total work hours, 40% of which were unpaid and led to $302 175 in lost wages (mean $1660). Caregivers lost $68 655 in wages (mean $377). Although some donors received financial assistance, 89% had a net financial loss in the 12-mo period, with one-third (33%) reporting a loss exceeding $2500. Financial burden was higher for those with greater travel distance to the transplant center (Spearman's ρ = 0.26, p < 0.001), lower household income (Spearman's ρ = -0.25, p < 0.001), and more unpaid work hours missed (Spearman's ρ = 0.52, p < 0.001). Achieving financial neutrality for LKDs must be an immediate priority for the transplant community, governmental agencies, insurance companies, nonprofit organizations, and society at large.

Critical Factors Associated With Missing Follow-Up Data for Living Kidney Donors in the United States.

Follow-up care for living kidney donors is an important responsibility of the transplant community. Prior reports indicate incomplete donor follow-up information, which may reflect both donor and transplant center factors. New UNOS regulations require reporting of donor follow-up information by centers for 2 years. We utilized national SRTR data to evaluate donor and center-level factors associated with completed follow-up for donors 2008-2012 (n = 30 026) using multivariable hierarchical logistic models. We compared center follow-up compliance based on current UNOS standards using adjusted and unadjusted models. Complete follow-up at 6, 12, and 24 months was 67%, 60%, and 50% for clinical and 51%, 40%, and 30% for laboratory data, respectively, but have improved over time. Donor risk factors for missing laboratory data included younger age 18-34 (adjusted odds ratio [AOR] = 2.03, 1.58-2.60), black race (AOR = 1.17, 1.05-1.30), lack of insurance (AOR = 1.25, 1.15-1.36), lower educational attainment (AOR = 1.19, 1.06-1.34), >500 miles to center (AOR = 1.78, 1.60-1.98), and centers performing >40 living donor transplants/year (AOR = 2.20, 1.21-3.98). Risk-adjustment moderately shifted classification of center compliance with UNOS standards. There is substantial missing donor follow-up with marked variation by donor characteristics and centers. Although follow-up has improved over time, targeted efforts are needed for donors with selected characteristics and at centers with higher living donor volume. Adding adjustment for donor factors to policies regulating follow-up may function to provide more balanced evaluation of center efforts.

Predonation Direct and Indirect Costs Incurred by Adults Who Donated a Kidney: Findings From the KDOC Study.

Limited information exists on the predonation costs incurred by eventual living kidney donors (LKDs). Expenses related to completion of the donation evaluation were collected from 194 LKDs participating in the multi-center, prospective Kidney Donor Outcomes Cohort (KDOC) Study. Most LKDs (n = 187, 96%) reported one or more direct costs, including ground transportation (80%), healthcare (24%), lodging (17%) and air transportation (14%), totaling $101 484 (USD; mean = $523 ± 942). Excluding paid vacation or sick leave, donor and companion lost wages totaled $35 918 (mean = $187 ± 556) and $14 378 (mean = $76 ± 311), respectively. One-third of LKDs used paid vacation or sick leave to avoid incurring lost wages. Few LKDs reported receiving financial support from the transplant candidate (6%), transplant candidate's family (3%), a nonprofit organization (3%), the National Living Donor Assistance Center (7%), or transplant center (3%). Higher total costs were significantly associated with longer distance traveled to the transplant center (p < 0.001); however, total costs were not associated with age, sex, race/ethnicity, household income, marital status, insurance status, or transplant center. Moderate predonation direct and indirect costs are common for adults who complete the donation evaluation. Potential LKDs should be advised of these possible costs, and the transplant community should examine additional strategies to reimburse donors for them.

Consensus conference on best practices in live kidney donation: recommendations to optimize education, access, and care.

Live donor kidney transplantation is the best treatment option for most patients with late-stage chronic kidney disease; however, the rate of living kidney donation has declined in the United States. A consensus conference was held June 5-6, 2014 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Transplant professionals, patients, and other key stakeholders discussed processes for educating transplant candidates and potential living donors about living kidney donation; efficiencies in the living donor evaluation process; disparities in living donation; and financial and systemic barriers to living donation. We summarize the consensus recommendations for best practices in these educational and clinical domains, future research priorities, and possible public policy initiatives to remove barriers to living kidney donation.

Organ donation video messaging: differential appeal, emotional valence, and behavioral intention.

Video narratives increasingly are used to draw the public's attention to the need for more registered organ donors. We assessed the differential impact of donation messaging videos on appeal, emotional valence, and organ donation intentions in 781 non-registered adults. Participants watched six videos (four personal narratives, one informational video without personal narrative, and one unrelated to donation) with or without sound (subtitled), randomly sequenced to minimize order effects. We assessed appeal, emotional valence, readiness to register as organ donors, and donation information-seeking behavior. Compared to other video types, one featuring a pediatric transplant recipient (with or without sound) showed more favorable appeal (p < 0.001), generated more positive emotional valence (p < 0.01), and had the most favorable impact on organ donor willingness (p < 0.001). Ninety-five (12%) participants clicked through to a donation website after viewing all six videos. Minority race (OR = 1.94, 95% CI = 1.20, 3.13, p = 0.006), positive change in organ donor readiness (OR = 0.26, 95% CI = 0.14, 0.48, p < 0.001), and total positive emotion (OR = 1.05, 95% CI = 1.03, 1.07, p < 0.001) were significant multivariable predictors of clicking through to the donation website. Brief, one-min videos can have a very dramatic and positive impact on willingness to consider donation and behavioral intentions to register as an organ donor.

Challenges to research and innovation to optimize deceased donor organ quality and quantity.

Solid organ transplantation is encumbered by an increasing number of waitlisted patients unrequited by the current organ supply. Preclinical models suggest that advances in deceased donor management and treatment can increase the quantity and quality of organs available for transplantation. However, the science of donor intervention and the execution of high quality, prospective, multi-center, randomized-controlled trials are restricted by a myriad of logistical challenges mired in regulatory and ethical ambiguity. By highlighting the obstacles to conducting research in deceased donors, this report endeavors to stimulate the creation of a multi-disciplinary framework to facilitate the design, implementation and supervision of innovative trials that increase the quantity and/or quality of deceased donor organs.

Prominent impact of community risk factors on kidney transplant candidate processes and outcomes.

Numerous factors impact patients' health beyond traditional clinical characteristics. We evaluated the association of risk factors in kidney transplant patients' communities with outcomes prior to transplantation. The primary exposure variable was a community risk score (range 0-40) derived from multiple databases and defined by factors including prevalence of comorbidities, access and quality of healthcare, self-reported physical and mental health and socioeconomic status for each U.S. county. We merged data with the Scientific Registry of Transplant Recipients (SRTR) and utilized risk-adjusted models to evaluate effects of community risk for adult candidates listed 2004-2010 (n = 209 198). Patients in highest risk communities were associated with increased mortality (adjusted hazard ratio [AHR] = 1.22, 1.16-1.28), decreased likelihood of living donor transplantation (adjusted odds ratio [AOR] = 0.90, 0.85-0.94), increased waitlist removal for health deterioration (AHR = 1.36, 1.22-1.51), decreased likelihood of preemptive listing (AOR = 0.85, 0.81-0.88), increased likelihood of inactive listing (AOR = 1.49, 1.43-1.55) and increased likelihood of listing for expanded criteria donor kidneys (AHR = 1.19, 1.15-1.24). Associations persisted with adjustment for rural-urban location; furthermore the independent effects of rural-urban location were largely eliminated with adjustment for community risk. Average community risk varied widely by region and transplant center (median = 21, range 5-37). Community risks are powerful factors associated with processes of care and outcomes for transplant candidates and may be important considerations for developing effective interventions and measuring quality of care of transplant centers.

Dynamic challenges inhibiting optimal adoption of kidney paired donation: findings of a consensus conference.

While kidney paired donation (KPD) enables the utilization of living donor kidneys from healthy and willing donors incompatible with their intended recipients, the strategy poses complex challenges that have limited its adoption in United States and Canada. A consensus conference was convened March 29-30, 2012 to address the dynamic challenges and complexities of KPD that inhibit optimal implementation. Stakeholders considered donor evaluation and care, histocompatibility testing, allocation algorithms, financing, geographic challenges and implementation strategies with the goal to safely maximize KPD at every transplant center. Best practices, knowledge gaps and research goals were identified and summarized in this document.

Disclosing recipient information to potential living donors: preferences of donors and recipients, before and after surgery.

Consensus guidelines, while recommending that potential living donors should be given information that could impact their donation decision, are nonspecific about the types of information that should be disclosed. We surveyed potential (n = 36) and past (n = 45) living donors and transplant candidates (n = 45) and recipients (n = 45) about their preferences for sharing or knowing specific information about the recipient, how this information would impact decision-making, and who should be responsible for disclosing information. Potential donors were less likely than all others to feel that recipient information should be disclosed to potential donors. Donors and recipients felt most strongly about disclosing if the recipient lost a previously transplanted kidney due to medication nonadherence as well as the likelihood of 1- and 5-year graft survival. Most donors would be less likely to pursue donation if the recipient lost a previously transplanted kidney due to medication nonadherence or generally had problems with taking medications as prescribed. Transplant programs should consider how to best balance the potential donor's right to receive information that could reasonably be expected to affect their decision-making process with the recipient's right to privacy and confidentiality.

Patients' willingness to accept expanded criteria donor liver transplantation.

Utilization of livers from expanded criteria donors (ECD) is one strategy to overcome the severe organ shortage. The decision to utilize an ECD liver is complex and fraught with uncertainty for both providers and patients. We assessed patients' willingness to accept ECD liver transplantation (LTx) and acceptable 1-year mortality risk. One hundred eight patients listed for LTx were asked to rate their willingness to accept ECD LTx and the associated 1-year mortality risk they were willing to accept. Also, patients completed the SF-36v2 and sociodemographic and health information was gathered from their medical records. Patients reported significantly higher willingness to accept standard criteria donor (SCD) versus ECD LTx (t = 13.8, p < 0.001), with more than one-third of patients reporting low willingness to accept ECD LTx. Relative to our center's 10% SCD LTx 1-year mortality rate, most patients (71%) were willing to accept moderately or substantially higher 1-year mortality risk for ECD LTx. In multivariable analyses, higher lab MELD score and white race were significant independent predictors of both ECD willingness and ECD increased mortality risk acceptability. Findings highlight the importance of assessing patients' willingness to pursue ECD LTx and the relative mortality risks they are willing to accept.

Framing disparities along the continuum of care from chronic kidney disease to transplantation: barriers and interventions.

Research in renal transplantation continues to document scores of disparities affecting vulnerable populations at various stages along the transplantation process. Given that both biological and environmental determinants contribute significantly to variation, identifying factors underlying an unfairly biased distribution of the disease burden is crucial. Confounded definitions and gaps in understanding causal pathways impede effectiveness of interventions aimed at alleviating disparities. This article offers an operational definition of disparities in the context of a framework aimed at facilitating interventional research. Utilizing an original framework describing the entire continuum of the transplant process from diagnosis of chronic kidney disease through successful transplant, this article explores the case of racial disparities, illustrating key factors predicting and perpetuating disparities. Though gaps in current research leave us unable to identify which stages of the transplant pathway adversely affect most people, by identifying key risk factors across the continuum of care, this article highlights areas suited for targeted interventions and presents recommendations for improvement and future research.

Stimulus for organ donation: a survey of the American Society of Transplant Surgeons membership.

Federal legislation has been proposed to modify the National Organ Transplant Act in a way that would permit government-regulated strategies, including financial incentives, to be implemented and evaluated. The Council and Ethics Committee of the American Society of Transplant Surgeons conducted a brief web-based survey of its members' (n = 449, 41.6% response rate) views on acceptable or unacceptable strategies to increase organ donation. The majority of the membership supports reimbursement for funeral expenses, an income tax credit on the final return of a deceased donor and an income tax credit for registering as an organ donor as strategies for increasing deceased donation. Payment for lost wages, guaranteed health insurance and an income tax credit are strategies most strongly supported by the membership to increase living donation. For both deceased and living donation, the membership is mostly opposed to cash payments to donors, their estates or to next-of-kin. There is strong support for a government-regulated trial to evaluate the potential benefits and harms of financial incentives for both deceased and living donation. Overall, there is strong support within the ASTS membership for changes to NOTA that would permit the implementation and careful evaluation of indirect, government-regulated strategies to increase organ donation.

The instability of organ donation decisions by next-of-kin and factors that predict it.

We examined the instability of organ donation decisions made by next-of-kin and factors that predict whether nondonors wish they had consented to donation. Next-of-kin of donor-eligible individuals from one organ procurement organization participated in a semistructured telephone interview. Participants were asked if they would make the same decision if they had to make it again today. Of the 147 next-of-kin donors, 138 (94%) would make the same decision again, 6 (4%) would not consent to donation and 3 (2%) were unsure. Of the 138 next-of-kin nondonors, 89 (64%) would make the same decision again, 37 (27%) would consent to donation and 12 (9%) were unsure. Regret among nondonors was more likely when the next-of-kin had more favorable transplant attitudes (OR = 1.76, CI = 1.15, 2.69), had the first donation discussion with a non-OPO professional (OR = 0.21, CI = 0.13, 0.65), were not told of their loved one's death before this discussion (OR = 0.23, CI = 0.10, 0.50), did not feel they were given enough time to make the decision (OR = 0.25, CI = 0.11, 0.55), had not discussed donation with family members (OR = 0.30, CI = 0.13, 0.72) and had not heard a public service announcement about organ donation (OR = 0.29, CI = 0.13, 0.67). Organ procurement organizations (OPOs) should consider targeting these variables in educational campaigns and donation request approaches.

Mismanaging the gift of life: noncompliance in the context of adult stem cell transplantation.

In this paper, we address the issue of noncompliance with medical regimens in adult stem cell transplant patients. We review the definition, prevalence, and consequences of noncompliance and address whether or not we should alter our medical decision-making with regard to stem cell transplantation based on patient noncompliance. We discuss how the health care team should handle noncompliance issues and propose clinical guidelines for stem cell transplant programs to consider regarding evaluation and management of medical compliance.

The role of patients' ability to pay, gender, and smoking history on public attitudes toward cardiac transplant allocation: an experimental investigation.

This study assessed public attitudes toward organ allocation through vignettes that were varied by patient's ability to pay (insured or uninsured), gender, and smoking history (current, former, or never). Participants were 681 adults contacted at a state driver's license office who read a vignette about a heart transplant candidate and subsequently rated their likelihood and priority of offering transplantation. Results revealed main effects for patient smoking history exclusively. Post hoc analyses for likelihood of offering transplantation revealed that participants gave higher ratings for never smokers than current smokers. For priority of transplantation, analyses revealed higher ratings for never smokers than for both former smokers and current smokers. Results suggest that public opinion about organ allocation may include the consideration of smoking history but not ability to pay or gender.