Social media and organ donation: Ethically navigating the next frontier.

As the organ shortage continues to grow, the creation of social media communities by transplant hospitals and the public is rapidly expanding to increase the number of living donors. Social media communities are arranged in myriad ways and without standardization, raising concerns about transplant candidates' and potential donors' autonomy and quality of care. Social media communities magnify and modify extant ethical issues in deceased and living donation related to privacy, confidentiality, professionalism, and informed consent, and increase the potential for undue influence and coercion for potential donors and transplant candidates. Currently, no national ethical guidelines have been developed in the United States regarding the use of social media to foster organ transplantation. We provide an ethical framework to guide transplant stakeholders in using social media for public and patient communication about transplantation and living donation, and offer recommendations for transplant clinical practice and future research.

APOL1-Associated End-Stage Renal Disease in a Living Kidney Transplant Donor.

Homozygosity for apolipoprotein-L1 (APOL1) risk variants has emerged as an important predictor of renal disease in individuals of African descent over the past several years. Additionally, these risk variants may be important predictors of renal allograft failure when present in a living or deceased donor. Currently, there is no universal recommendation for screening of potential donors. We present a case of end-stage renal disease with focal segmental glomerulosclerosis in a living donor 7 years following donor nephrectomy. Genetic assessment revealed homozygosity for the G1 high-risk APOL1 variant.

Between Scylla and Charybdis: charting an ethical course for research into financial incentives for living kidney donation.

New approaches to address the kidney scarcity in the United States are urgently needed. The greatest potential source of kidneys is from living donors. Proposals to offer financial incentives to increase living kidney donation rates remain highly controversial. Despite repeated calls for a pilot study to assess the impact of financial compensation on living kidney donation rates, many fear that financial incentives will exploit vulnerable individuals and cast the field of transplantation in a negative public light, ultimately reducing donation rates. This paper provides an ethical justification for conducting a pilot study of a federally regulated approach to providing financial incentives to living kidney donors, with the goal of assessing donors' perceptions.

Development of a Donor-Centered Approach to Risk Assessment: Rebalancing Nonmaleficence and Autonomy.

Living kidney donors are often excluded from the shared decision making and patient-centered models that are advocated in medical practice. Thresholds for acceptable risk vary between transplant centers, and between clinicians and donors. Although donor selection committees commonly focus on medical risks, potential donors also consider nonmedical risks and burdens, which may alter their assessment of an acceptable level of medical risk. Thus, transplant centers may encounter ethical tensions between nonmaleficence and respect for donor autonomy. A donor-centered model of risk assessment and risk reconciliation would integrate the donor's values and preferences in a shared decision about their eligibility to donate. This paper argues for shifting to a donor-centered model of risk assessment, and presents a research agenda to facilitate the greater participation of donors in their own evaluation and approval processes.

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.

Does financial compensation for living kidney donation change willingness to donate?

The potential use of financial compensation to increase living kidney donation rates remains controversial in potentially introducing undue inducement of vulnerable populations to donate. This cross-sectional study assessed amounts of financial compensation that would generate motivation and an undue inducement to donate to family/friends or strangers. Individuals leaving six Departments of Motor Vehicles were surveyed. Of the 210 participants who provided verbal consent (94% participation rate), respondents' willingness to donate would not change (70%), or would increase (29%) with compensation. Median lowest amounts of financial compensation for which participants would begin to consider donating a kidney were $5000 for family/friends, and $10,000 for strangers; respondents reporting $0 for family/friends (52%) or strangers (26%) were excluded from analysis. Median lowest amounts of financial compensation for which participants could no longer decline (perceive an undue inducement) were $50,000 for family/friends, and $100,000 for strangers; respondents reporting $0 for family/friends (44%) or strangers (23%) were excluded from analysis. The two most preferred forms of compensation included: direct payment of money (61%) and paid leave (21%). The two most preferred uses of compensation included: paying off debt (38%) and paying nonmedical expenses associated with the transplant (29%). Findings suggest tolerance for, but little practical impact of, financial compensation. Certain compensation amounts could motivate the public to donate without being perceived as an undue inducement.

Efficacy of a sun protection workbook for kidney transplant recipients: a randomized controlled trial of a culturally sensitive educational intervention.

A culturally sensitive educational intervention that encouraged sun protection behaviors among kidney transplant recipients (KTRs) was developed and the short-term efficacy was evaluated. Non-Hispanic White, Hispanic/Latino and non-Hispanic Black patients, who received a transplant 2-24 months prior to the study, were randomized into two study groups: intervention versus standard of care. Electronic reminders tailored to the weather conditions were sent every 2 weeks by text message or email. Self-reported surveys and biologic measurements were obtained prior to the intervention and 6 weeks later. Among the 101 study participants, there was a statistically significant increase in knowledge, recognition of personal risk of developing skin cancer, willingness to change sun protection behavior and self-reported performance of sun protection in participants receiving the intervention in comparison with those receiving standard of care (p < 0.05). The pigment darkening of the sun-exposed forearm and sun damage of the forearm and sunburns/skin irritation from the sun were significantly less in participants receiving the intervention (p < 0.05). Providing sun protection education at the beginning of summer with reminders tailored to weather conditions helped KTRs adopt sun protection practices. This sun protection program for KTRs may be incorporated into the care provided by the nephrologist or transplant surgeon.

Education and informed consent about increased risk donor kidneys: a national survey of non-physician transplant providers.

INTRODUCTION: Transplant providers must understand the definition of increased risk donor (IRD) organs to effectively educate transplant candidates and obtain informed consent. This study surveyed non-physician providers from 20 transplant centers about their educational and informed consent practices of IRD kidneys. METHODS: An anonymous, web-based survey about the content and timing of education and informed consent for potential recipients of IRD kidneys, providers' knowledge of IRD kidneys, and provider and center characteristics was completed by most (67%; 90 of 135) of those invited to participate; 87 responses were included in analysis. RESULTS: Most (80%) reported understanding the concept of IRD kidneys. However, few reported sufficient knowledge of the Organ Procurement and Transplantation Network definition of IRDs, risk factors, screening tests, window periods, and infection transmission rates. Most (56%) felt uncomfortable with obtaining specific informed consent for IRD kidneys. Most respondents received informal education about IRD kidneys (78%), and recognized the need for (98%) and were interested in receiving (99%) further education on this topic. CONCLUSION: Non-physician transplant providers need and are interested in better education about IRD kidneys to effectively educate patients and obtain patients' informed consent.

When the living and the deceased cannot agree on organ donation: a survey of US organ procurement organizations (OPOs).

The legal concept of first person authorization (FPA) is based on the principle that a decision by a person with decision-making capacity should be respected even after he or she dies. Although the transplant community largely supports this concept, its implementation has not been universal. We conducted a web-based survey of all 58 Organ Procurement Organization (OPO)executive directors in the United States to assess OPOs' procurement policies and practices in the context of family objections. All 58 respondents(100%) responded to our survey. All OPOs except one have an online donor registration website. Most OPOs(89%) (51 of 57 respondents) estimated that the frequency of family objecting to organ donation in cases of registered donors was <10%. No OPOs reported the frequency to be higher than 25%. Only 50% (27 of 54) of the OPOs have a written policy on handling family objections. Approximately 80% of the OPOs reported honoring FPA. However, in the past 5 years, 20 OPOs (35%) have not yet participated in organ procurement from a registered deceased donor over family objection. Further research to identify the barriers and possible solutions to implementing FPA is warranted.

Qualitative research in organ transplantation: recent contributions to clinical care and policy.

Qualitative studies remain relatively uncommon in the transplant literature but are an important approach contributing unique strengths in some areas of research. With the increased focus on patient-centered research and decision-making, it is timely to review qualitative research in the context of transplantation. While quantitative research addresses questions about the effectiveness of interventions or associations between risk factors and outcomes, qualitative research has an equal and complementary role in providing understanding about people's behaviors, attitudes, and values. Qualitative research has provided insights into some of the important but elusive questions in transplantation, including the sources of barriers to organ donation and inequities in access to transplantation, nonadherence to immunosuppressive regimens, and complex psychosocial outcomes. This review highlights recent contributions of qualitative research to transplantation practice and policy, and identifies key principles to guide qualitative research appraisal.

Opportunities for shared decision making in kidney transplantation.

Health researchers and policy-makers increasingly urge both patient and clinician engagement in shared decision making (SDM) to promote patient-centered care. Although SDM has been examined in numerous clinical settings, it has received little attention in solid organ transplantation. This paper describes the application of SDM to the kidney transplantation context. Several distinctive features of kidney transplantation present challenges to SDM including fragmented patient-provider relationships, the time-sensitive and unpredictable nature of deceased organ offers, decision-making processes by transplant providers serving as both organ guardians (given the organ scarcity) versus advocates for specific patients seeking transplantation, variable clinical practices and policies among transplant centers, and patients' potentially compromised cognitive status and literacy levels. We describe potential barriers to and opportunities for SDM, and posit that SDM is feasible, warranting encouragement in kidney transplantation. We propose strategies to promote and overcome obstacles to SDM in kidney transplantation. We contend that engagement in SDM can be facilitated by re-organization of clinical care, communication and education of providers and patients.

Informed consent for living donation: a review of key empirical studies, ethical challenges and future research.

Given the organ scarcity, live organ donation is increasingly considered a viable alternative for kidney and liver transplantation. Yet living donation challenges the ethical principle of nonmaleficence by subjecting healthy individuals to medical, psychosocial and unknown risks. Therefore, transplant providers, policy-makers and donors are committed to ensuring that prospective donors provide adequate informed consent to undergo the procedure. Informed consent for living donation is ethically required as a means of demonstrating respect for donor's autonomy and protecting their safety. However, all elements of informed consent are fraught with difficulties due to the unique nature of the donation process and outcome. This paper reviews empirical research on informed consent for live kidney donors (LKD) and live liver donors (LLD) for both adult and pediatric recipients. As this review shows, studies that empirically assessed the quality of informed consent elements reveal considerable variability and deficiencies across the informed consent process, suggesting the need for improvement. This review highlights challenges to each element of consent for both LKDs and LLDs, and situates trends within broader policy contexts, ethical debates and avenues for future innovative research.

The challenge of informed consent for increased risk living donation and transplantation.

The Organ Procurement and Transplantation Network (OPTN) mandates that organ recipients provide "specific informed consent" before accepting organs that the OPTN defines as "increased risk". However, the OPTN does not provide specific guidelines for what information should be disclosed to potential recipients. Such vagueness opens the door to inadequate informed consent. This paper examines the ethical dimensions of informed consent when the prospective living donor has self-reported behaviors associated with increased risk for infection transmission. Donor privacy is a primary ethical concern that conflicts with recipients' informed consent for use of increased risk organs. We propose that both the increased risk status and the specific behavior be disclosed to the recipient. Because the actual risk posed is linked to the type of risk behavior, disclosure is therefore needed to make an informed decision. The donor's risk behavior is material to recipients' decision making because it may impact the donor-recipient relationship. This relationship is the foundation of the donation and acceptance transaction, and thus comprises a critical feature of the recipient's informed consent. Optimizing a recipient's informed consent is essential to protecting patient safety and autonomy.

Transplant center provision of education and culturally and linguistically competent care: a national study.

Although transplant centers are required to educate patients about kidney transplantation (KT) and living donation (LD), little is known about the educational format, and cultural and linguistic competence necessary for patients to make informed treatment decisions. This study surveyed US transplant administrators about education provided concerning KT and LD and culturally and linguistically competent care. Transplant administrators were invited to participate in an anonymous Internet-based survey about education format, education providers, promoting LD, culturally and linguistically competent care and center characteristics. Most (61%) transplant administrators contacted (N = 280/461) completed the survey. Most administrators (91%) reported that their center provides any type of formal education in their pre-KT evaluation. Education was mostly provided by: nurses (97%), social workers (72%) and surgeons (55%), and predominantly as one-on-one (80%) versus group discussions (60%). Education was primarily delivered through written materials (93%). Written educational materials in Spanish (86%) and the provision of interpreters (82%) were emphasized over educational sessions in Spanish (39%), or employing bilingual (51%) and bicultural staff (39%). Half (55%) promoted LD as the best option. Transplant centers need to take greater efforts to consistently provide appropriate education, promote LD, and provide culturally and linguistically competent care to ensure effective communication with all patients.

The quality of health insurance service delivery for kidney transplant recipients: a patient perspective.

Increased attention has been devoted to improving quality care in kidney transplantation. The discourse on quality care has focused on transplant center metrics and other clinical parameters. However, there has been little discussion on the quality of health insurance service delivery, which may be critical to kidney recipients' access to transplantation and immunosuppression. This paper describes and provides a framework for characterizing kidney transplant recipients' positive and negative interactions with their insurers. A consecutive cohort of kidney recipients (n = 87) participated in semistructured interviews on their interactions with insurance agencies. Patients reported negative (37%) and/or neutral or positive (79%) interactions with their insurer (a subset [16%] reported both). Perceived negative experiences included: poor service, logistical difficulties with confusing and time-consuming paperwork, poor communication, rude behavior and concerns about adequate coverage. Positive experiences related to: having good coverage, a simple application process, straightforward transactions and helpful communication. Findings suggest that even when patients have insurance coverage, difficult interactions with insurers and limited skills in navigating insurance options may limit their access to needed medications and health services. Future research is needed to test this hypothesis in a larger population.