Living donor liver transplant candidate and donor selection and engagement: Meeting report from the living donor liver transplant consensus conference.

INTRODUCTION: Living donor liver transplantation (LDLT) is a promising option for mitigating the deceased donor organ shortage and reducing waitlist mortality. Despite excellent outcomes and data supporting expanding candidate indications for LDLT, broader uptake throughout the United States has yet to occur. METHODS: In response to this, the American Society of Transplantation hosted a virtual consensus conference (October 18-19, 2021), bringing together relevant experts with the aim of identifying barriers to broader implementation and making recommendations regarding strategies to address these barriers. In this report, we summarize the findings relevant to the selection and engagement of both the LDLT candidate and living donor. Utilizing a modified Delphi approach, barrier and strategy statements were developed, refined, and voted on for overall barrier importance and potential impact and feasibility of the strategy to address said barrier. RESULTS: Barriers identified fell into three general categories: 1) awareness, acceptance, and engagement across patients (potential candidates and donors), providers, and institutions, 2) data gaps and lack of standardization in candidate and donor selection, and 3) data gaps regarding post-living liver donation outcomes and resource needs. CONCLUSIONS: Strategies to address barriers included efforts toward education and engagement across populations, rigorous and collaborative research, and institutional commitment and resources.

Health system barriers and facilitators to living donor kidney transplantation: a qualitative case study in British Columbia.

BACKGROUND: In patients with kidney failure, living donor kidney transplantation (LDKT) is the best treatment option; yet, LDKT rates have stagnated in Canada and vary widely across provinces. We aimed to identify barriers and facilitators to LDKT in a high-performing health system. METHODS: This study was conducted using a qualitative exploratory case study of British Columbia. Data collection, conducted between October 2020 and January 2021, entailed document review and semistructured interviews with key stakeholders, including provincial leadership, care teams and patients. We recruited participants via purposive sampling and snowballing technique. We generated themes using thematic analysis. RESULTS: After analysis of interviews conducted with 22 participants (5 representatives from provincial organizations, 7 health care providers at transplant centres, 8 health care providers from regional units and 2 patients) and document review, we identified the following 5 themes as facilitators to LDKT: a centralized infrastructure, a mandate for timely intervention, an equitable funding model, a commitment to collaboration and cultivating distributed expertise. The relationship between 2 provincial organizations (BC Transplant and BC Renal Agency) was identified as key to enabling the mandate and processes for LDKT. Five barriers were identified that arose from silos between provincial organizations and manifested as inconsistencies in coordinating LDKT along the spectrum of care. These were divided accountability structures, disconnected care processes, missed training opportunities, inequitable access by region and financial burden for donors and recipients. INTERPRETATION: We found strong links between provincial infrastructure and the processes that facilitate or impede timely intervention and referral of patients for LDKT. Our findings have implications for policy-makers and provide opportunities for cross-jurisdictional comparative analyses.

Expansion of Patient Education Programming Regarding Live Donor Liver Transplantation via Virtual Group Encounters During the COVID-19 Pandemic.

During the coronavirus 2019 pandemic we converted our liver transplant waitlist candidate education and support program to a virtual format and expanded it to include ongoing engagement sessions aimed to educate and empower patients to maximize opportunity for live donor liver transplantation. Over a period of 6 months from April 2020 to Sept 2020 we included 21 patients in this pilot quality improvement program. We collected data regarding patient response and potential donor referral activity. Overall, patient response was positive, and some patients saw progress toward live donor liver transplantation by fostering inquiry of potential live liver donors. Optimization of logistical aspects of the program including program flow, technology access, and utilization is required to enhance patient experience. Long-term follow-up is needed to assess impact on the outcome of transplantation rates. Future data collection and analysis should focus on assessment of any potential disparity that may result from utilization of virtual programming. Herein we provide a framework for this type of virtual program and describe our experience.

Value-Based Care in Nephrology: The Kidney Care Choices Model and Other Reforms.

The Advancing American Kidney Health (AAKH) initiative has reinvigorated the focus on improving the care of patients with advanced CKD. Multiple interventions have been planned, focusing on education campaigns for both clinicians and patients, delaying the progression of kidney disease and improving utilization of home dialysis modalities and kidney transplantation. Value-based care models for patients with advanced kidney disease are being rolled out, with the ESKD treatment choices model starting in January 2021, and the Kidney Care Choices model planned to start in January 2022. There is increasing emphasis on the role of the nephrologist as the "captain of the ship," leading efforts in care coordination as physician leaders. The transplant reforms have focused on changes to organ procurement organizations aiming to increase availability of organs, and transplants performed, both deceased and living donor, and removing financial disincentives from live organ donation. The American Society of Nephrology (ASN) and the National Kidney Foundation (NKF) are partnering with the Department of Health and Human Services to develop educational material for clinicians and patients. In this review, we discuss these reforms, potential challenges that have arisen, and potential solutions, with emphasis on the Kidney Care Choices model.

Topics, Delivery Modes, and Social-Epistemological Dimensions of Web-Based Information for Patients Undergoing Renal Transplant and Living Donors During the COVID-19 Pandemic: Content Analysis.

BACKGROUND: The COVID-19 pandemic has markedly affected renal transplant care. During this time of social distancing, limited in-person visits, and uncertainty, patients and donors are relying more than ever on telemedicine and web-based information. Several factors can influence patients' understanding of web-based information, such as delivery modes (instruction, interaction, and assessment) and social-epistemological dimensions (choices in interactive knowledge building). OBJECTIVE: The aim of this study was to systemically evaluate the content, delivery modes, and social-epistemological dimensions of web-based information on COVID-19 and renal transplantation at time of the pandemic. METHODS: Multiple keyword combinations were used to retrieve websites on COVID-19 and renal transplantation using the search engines Google.com and Google.nl. From 14 different websites, 30 webpages were examined to determine their organizational sources, topics, delivery modes, and social-epistemological dimensions. RESULTS: The variety of topics and delivery modes was limited. A total of 13 different delivery modes were encountered, of which 8 (62%) were instructional and 5 (38%) were interactional; no assessment delivery modes were observed. No website offered all available delivery modes. The majority of delivery modes (8/13, 62%) focused on individual and passive learning, whereas group learning and active construction of knowledge were rarely encountered. CONCLUSIONS: By taking interactive knowledge transfer into account, the educational quality of eHealth for transplant care could increase, especially in times of crisis when rapid knowledge transfer is needed.

Efficacy of Educational Interventions in Improving Measures of Living-donor Kidney Transplantation Activity: A Systematic Review and Meta-analysis.

BACKGROUND: To address patient-level barriers to living-donor kidney transplantation (LDKT), centers have implemented educational interventions. Recently, some have highlighted several gaps in knowledge and lack of evidence of efficacy of these interventions. No review has synthesized the available data. METHODS: We conducted a systematic review and meta-analysis of studies conducted to increase measures of LDKT. Outcomes of interest were LDKT rates, donor evaluation, donor contact/inquiry, total transplantation rates, and change in knowledge scores and pursuit behaviors. A literature search was conducted across 7 databases from inception until 2017. Educational interventions were a decision/teaching aid alone or with personalized sessions. Comparator was another intervention or nonspecific education. Random effects meta-analysis was performed to pool risk ratios (RRs) across studies. RESULTS: Of the 1813 references, 15 met the inclusion criteria; 9 were randomized control trials. When compared with nonspecific education, interventions increased LDKT rates (RR = 2.54; 95% confidence interval [CI], 1.49-4.35), donor evaluation (RR = 3.82; 95% CI, 1.91-7.64), and donor inquiry/contact (RR = 2.41; 95% CI, 1.53-3.80), but not total transplants (RR = 1.24; 95% CI, 0.96-1.61). Significant increased mean knowledge scores postintervention was noted, and most showed favorable trends in pursuit behaviors. Quality across the studies was mixed and sometimes difficult to assess. The biggest limitations were small sample size, selection bias, and short follow-ups. CONCLUSIONS: Educational interventions improve measures of LDKT activity; however, current literature is heterogeneous and at risk of selection bias. Prospective studies with diverse patient populations, longer follow-ups, and robust outcomes are needed to inform clinical practice.

Development of a Telehealth Intervention to Improve Access to Live Donor Kidney Transplantation.

BACKGROUND: Live donor kidney transplantation (LDKT) is underutilized by patients with end-stage kidney disease due to knowledge, communication, and logistical barriers. MATERIAL AND METHODS: The Talking About Live Kidney Donation Social Worker Intervention (TALK-SWI) is a previously validated intervention demonstrated to improve patients' access to and pursuit of LDKT through in-person delivery of education and social support. To help overcome logistical barriers to LDKT, we adapted TALK-SWI into a telehealth intervention employing digital (ie, tablet, smartphone) and telephone technologies. We studied the usability and acceptability of both the mobile device and telephone counseling portions of the intervention among people with kidney disease. For the digital portion, we assessed critical (ie, inability to complete a task) and non-critical (ie, ability to complete a task utilizing an alternative method) errors participants encountered when using the program and their preferences regarding digital materials. Simultaneously, we assessed participants' satisfaction with telephone-adapted counseling compared to the original, in-person counseling. RESULTS: The 15 participants testing the digital technology made 25 critical errors and 29 non-critical errors, while they easily completed 156 tasks (out of 210). A majority of participants (73%) preferred the tablet/smart phone education application over traditional materials, and most (80%) indicated they would be more likely to utilize the mobile platform over traditional materials. Participants testing the telephone-adapted (n = 45) and in-person (n = 125) social worker counseling all reported high satisfaction with the intervention. CONCLUSION: We successfully adapted a validated educational and behavioral intervention to improve access to LDKT into a usable and acceptable telehealth intervention.

Increasing living donation by implementing the Kidney Coach Program.

Candidates for living donor kidney transplantation (LDKT) find it difficult to discuss living donation with people in their social network, and there is a lack of useful interventions to train them. The Kidney Coach Program (KCP) was developed to equip individuals (advocates for candidates and candidate themselves) with the tools needed to find potential donors. The purpose of this pilot study is to evaluate the effects of the KCP on increasing the number of people considering living donation. METHODS: Candidates for the KCP were recruited. Data were collected on the number of live donor inquiries in the coach group compared to listed patients (historical controls). RESULTS: Over a 12-month period, 20 transplant candidates enrolled in the KCP were compared to 50 controls. Eighty percent of the participants in the KCP had at least one donor inquiry compared to 38% of controls (P = 0.001). Significantly, more Caucasian candidates participated in the KCP compared to other racial groups. CONCLUSIONS: The KCP can be an effective method to increase awareness of a patient's need for LDKT. Existing clinical staff successfully implemented the program. Transplant programs should provide training to candidates and their supports on effective ways to find a living donor.

The Onus for Altruism in Kidney Transplantation.

Ideally, all programs performing living donor kidney transplantation should educate patients on all contemporary exchange options. They should be strongly encouraged to participate in multicenter exchange, or at least refer those with a willing yet incompatible donor to a center that does, and to preferentially allocate altruistic donor kidneys towards chain initiation.

[Information booklet for related hematopoietic stem cell donors: Guidelines from the Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC)]. / Un support d'information pour les donneurs apparentés de cellules souches hématopoïétiques : recommandations de la Société francophone de greffe de moelle et de thérapie cellulaire (SFGM-TC).

Providing information to living donors is first and foremost a legal obligation as well as an ethical one, not to mention necessary to health care provision. It's been shown that quality of information concerning the procedure's practical aspects, scheduling of clinical tests and examinations, withdrawing stem cells for the donation, post-donation symptoms, and support provided by healthcare teams, directly impacts the donor's quality of experience. Taking this into consideration our group decided it was essential to create an informational support for donors in the form of a booklet to be provided in different hematopoietic stem cell transplant centers across France. In September 2016 in Lille, France, the Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC) organized the 7th allergenic hematopoietic stem cell transplantation clinical practices harmonization workshops. As part of these workshops, our group worked collectively to develop a basis of indispensable information to be included in the booklet and presented using clear and accessible language.

Willingness of human immunodeficiency virus-positive patients to donate their organs for transplantation in Taiwan: a cross-sectional questionnaire survey.

BACKGROUND: With the introduction of combination antiretroviral therapy (cART) that has significantly improved survival, human immunodeficiency virus (HIV)-positive patients may be potential organ donors to HIV-positive recipients in a few countries. Organ shortage remains a challenge for organ transplantation in Taiwan, where organ donation by HIV-positive patients remains prohibited by law. METHODS: We assessed the willingness of organ donation (should they be pronounced brain dead, and the ban on HIV-positive organ donation be lifted) among HIV-positive patients who received regular HIV care at a university hospital in a cross-sectional survey between May and August 2015 with the use of an anonymous, self-administered questionnaire interview. RESULTS: Of the 1010 participants, 93.7% were receiving cART with the latest mean CD4 count and plasma HIV RNA load of 587 cells/mm3 and 2.73 log10 copies/mL, respectively. Overall, 71.9% were willing to donate organs. In multivariate analysis, factors associated with willingness to donate organs included college or graduate school diploma (odds ratio [OR] 1.571, 95% confidence interval [CI] 1.166-2.191), registered willingness to donate in the National Health Insurance system (OR 9.430, 95% CI 1.269-70.051), and knowledge of the information on HIV-positive deceased donors (HIVDD) (OR 1.673, 95% CI 1.073-2.608). CONCLUSIONS: We concluded that a significant proportion (71.9%) of HIV-positive Taiwanese patients were willing to donate their organs. The willingness was associated with a higher education level, prior registered willingness to donate organs, and awareness of HIVDD.

A patient navigator and education program for increasing potential living donors: a comparative observational study.

BACKGROUND AND OBJECTIVES: Person-centered clinical environments may promote living donation for patients with end-stage renal disease (ESRD). We implemented an observational study design to explore whether a patient navigator (PN) program with person-centered education in nephrology practice settings could increase potential living donors (PLDs) and, subsequently, increase living transplantation. DESIGN, SETTING, PARTICIPANTS, AND MEASURES: Patients referred to (N = 4621) and/or transplanted at (N = 950) our transplant center during 2007-2012 were eligible for inclusion. Two analytical study populations were derived from propensity score matched patient groups. Outcomes comprised total PLDs per candidate and living vs. deceased transplantation for recipients. RESULTS: Multivariable generalized estimating equations logistic regression showed that PN practice candidates were significantly more likely to have an initial inquiry PLD (odds ratio [OR] = 1.21, 95% confidence interval [CI] = 1.01-1.44) and a preliminary screening PLD (OR = 1.27, 95% CI = 1.05-1.54), while there were no significant differences observed in evaluated PLD (OR = 0.94, 95% CI = 0.61-1.45). CONCLUSIONS: Our results suggest that our person-centered PN program stimulated willingness to seek living transplantation and was associated with a trend toward increased LD.

Factors Influencing Hematopoietic Stem Cell Donation Intention in Hong Kong: A Web-Based Survey.

BACKGROUND: Hematopoietic stem cell transplantation (HSCT) has become increasingly common for treatment of severe hematological disorders. However, the number of compatible hematopoietic stem cell (HSC) donors is usually limited. Expanding donor pool size would enhance matching success by increasing donor frequency and introducing allelic diversity within the registry. Identifying factors that affect public willingness towards HSC donation allows better strategic recruitment planning to facilitate donor pool expansion. Previous studies in white populations showed knowledge, family attitude, trust towards the healthcare system, fear, self-identity, and social identity are important factors related to HSC donation intention. However, given the differences in cultural and society values that exist across different regions, in particular between the East and West, whether these factors influence HSC donation willingness in Hong Kong remained to be determined. The objective of this study was to identify factors associated with HSC donation motivation in Hong Kong. MATERIAL AND METHODS: A large-scale, cross-sectional, observational study involving 3479 local participants. RESULTS: There is a positive correlation of HSC donation intention with younger age (18-32, OR: 1.80, p≤0·001) and higher education (OR: 1·47, p≤0.001). Better HSCT knowledge is also related to greater HSC donation intention (OR: 2.55, p£0.001). CONCLUSIONS: Our data suggests HSCT education could help to improve donor recruitment and that more resources should be allocated for public education.

The TALKS study to improve communication, logistical, and financial barriers to live donor kidney transplantation in African Americans: protocol of a randomized clinical trial.

BACKGROUND: Live donor kidney transplantation (LDKT), an optimal therapy for many patients with end-stage kidney disease, is underutilized, particularly by African Americans. Potential recipient difficulties initiating and sustaining conversations about LDKT, identifying willing and medically eligible donors, and potential donors' logistical and financial hurdles have been cited as potential contributors to race disparities in LDKT. Few interventions specifically targeting these factors have been tested. METHODS/DESIGN: We report the protocol of the Talking about Living Kidney Donation Support (TALKS) study, a study designed to evaluate the effectiveness of behavioral, educational and financial assistance interventions to improve access to LDKT among African Americans on the deceased donor kidney transplant recipient waiting list. We adapted a previously tested educational and social worker intervention shown to improve consideration and pursuit of LDKT among patients and their family members for its use among patients on the kidney transplant waiting list. We also developed a financial assistance intervention to help potential donors overcome logistical and financial challenges they might face during the pursuit of live kidney donation. We will evaluate the effectiveness of these interventions by conducting a randomized controlled trial in which patients on the deceased donor waiting list receive 1) usual care while on the transplant waiting list, 2) the educational and social worker intervention, or 3) the educational and social worker intervention plus the option of participating in the financial assistance program. The primary outcome of the randomized controlled trial will measure potential recipients' live kidney donor activation (a composite rate of live donor inquiries, completed new live donor evaluations, or live kidney donation) at 1 year. DISCUSSION: The TALKS study will rigorously assess the effectiveness of promising interventions to reduce race disparities in LDKT. TRIAL REGISTRATION: NCT02369354.

Living Donor Kidney Transplantation: Improving Efficiencies in Live Kidney Donor Evaluation--Recommendations from a Consensus Conference.

The education, evaluation, and support of living donors before, during, and after donation have historically been considered the roles and responsibilities of transplant programs. Although intended to protect donors, ensure true informed consent, and prevent coercion, this structure often leaves referring nephrologists unclear about the donor process and uncertain regarding the ultimate outcome of potential donors for their patients. The aim of this article is to help the referring nephrologist understand the donor referral and evaluation process, help the referring nephrologist understand the responsibilities of the transplant program, and offer suggestions about how the referring nephrologist can help to improve efficiencies in the process of donor education and evaluation. A partnership between referring nephrologists and transplant programs is an important step in advancing living kidney donation. The referring nephrologists are the frontline providers and are in a unique position to offer education about living donation and improve efficiencies in the process. Understanding the donor referral and evaluation process, the responsibilities of the transplant program, and the potential role referring nephrologists can play in the process is critical to establishing such a partnership.

Living Donor Kidney Transplantation: Improving Education Outside of Transplant Centers about Live Donor Transplantation--Recommendations from a Consensus Conference.

Living donor kidney transplantation (LDKT) offers better quality of life and clinical outcomes, including patient survival, compared with remaining on dialysis or receiving a deceased donor kidney transplant. Although LDKT education within transplant centers for both potential recipients and living donors is very important, outreach and education to kidney patients in settings other than transplant centers and to the general public is also critical to increase access to this highly beneficial treatment. In June 2014, the American Society of Transplantation's Live Donor Community of Practice, with the support of 10 additional sponsors, convened a consensus conference to determine best practices in LDKT, including a workgroup focused on developing a set of recommendations for optimizing outreach and LDKT education outside of transplant centers. Members of this workgroup performed a structured literature review, conducted teleconference meetings, and met in person at the 2-day conference. Their efforts resulted in consensus around the following recommendations. First, preemptive transplantation should be promoted through increased LDKT education by primary care physicians and community nephrologists. Second, dialysis providers should be trained to educate their own patients about LDKT and deceased donor kidney transplantation. Third, partnerships between community organizations, organ procurement organizations, religious organizations, and transplant centers should be fostered to support transplantation. Fourth, use of technology should be improved or expanded to better educate kidney patients and their support networks. Fifth, LDKT education and outreach should be improved for kidney patients in rural areas. Finally, a consensus-driven, evidence-based public message about LDKT should be developed. Discussion of the effect and potential for implementation around each recommendation is featured, particularly regarding reducing racial and socioeconomic disparities in access to LDKT. To accomplish these recommendations, the entire community of professionals and organizations serving kidney patients must work collaboratively toward ensuring accurate, comprehensive, and up-to-date LDKT education for all patients, thereby reducing barriers to LDKT access and increasing LDKT rates.

African American kidney transplant patients' perspectives on challenges in the living donation process.

CONTEXT: The increasing shortage of deceased donor kidneys suitable for African Americans highlights the critical need to increase living donations among African Americans. Little research has addressed African American transplant recipients' perspectives on challenges and barriers related to the living donation process. OBJECTIVE: To understand the perspectives of African American recipients of deceased and living donor kidney transplants on challenges, barriers, and educational needs related to pursuing such transplants. PARTICIPANTS AND DESIGN: A mixed-method design involved 27 African American kidney recipients (13 male) in 4 focus groups (2 per recipient type: 16 African American deceased donor and 11 living donor recipients) and questionnaires. Focus group transcripts were evaluated with NVivo 10.0 (QSR, International) by using inductive and deductive qualitative methods along with crystallization to develop themes of underlying barriers to the living donor kidney transplant process and were compared with the questionnaires. RESULTS: Four main themes were identified from groups: concerns, knowledge and learning, expectations of support, and communication. Many concerns for the donor were identified (eg, process too difficult, financial burden, effect on relationships). A general lack of knowledge about the donor process and lack of behavioral skills on how to approach others was noted. The latter was especially evident among deceased donor recipients. Findings from the questionnaires on myths and perceptions supported the lack of knowledge in a variety of domains, including donors' surgical outcomes risks, costs of surgery, and impact on future health. Participants thought that an educational program led by an African American recipient of a living donor kidney transplant, including practice in approaching others, would increase the likelihood of transplant-eligible patients pursuing living donor kidney transplant.

Living-Donor Kidney Transplantation: Reducing Financial Barriers to Live Kidney Donation--Recommendations from a Consensus Conference.

Live-donor kidney transplantation (LDKT) is the best treatment for eligible people with late-stage kidney disease. Despite this, living kidney donation rates have declined in the United States in recent years. A potential source of this decline is the financial impact on potential and actual living kidney donors (LKDs). Recent evidence indicates that the economic climate may be associated with the decline in LDKT and that there are nontrivial financial ramifications for some LKDs. In June 2014, the American Society of Transplantation's Live Donor Community of Practice convened a Consensus Conference on Best Practices in Live Kidney Donation. The conference included transplant professionals, patients, and other key stakeholders (with the financial support of 10 other organizations) and sought to identify best practices, knowledge gaps, and opportunities pertaining to living kidney donation. This workgroup was tasked with exploring systemic and financial barriers to living kidney donation. The workgroup reviewed literature that assessed the financial effect of living kidney donation, analyzed employment and insurance factors, discussed international models for addressing direct and indirect costs faced by LKDs, and summarized current available resources. The workgroup developed the following series of recommendations to reduce financial and systemic barriers and achieve financial neutrality for LKDs: (1) allocate resources for standardized reimbursement of LKDs' lost wages and incidental costs; (2) pass legislation to offer employment and insurability protections to LKDs; (3) create an LKD financial toolkit to provide standardized, vetted education to donors and providers about options to maximize donor coverage and minimize financial effect within the current climate; and (4) promote further research to identify systemic barriers to living donation and LDKT to ensure the creation of mitigation strategies.

Living Donor Kidney Transplantation: Overcoming Disparities in Live Kidney Donation in the US--Recommendations from a Consensus Conference.

Despite its superior outcomes relative to chronic dialysis and deceased donor kidney transplantation, live donor kidney transplantation (LDKT) is less likely to occur in minorities, older adults, and poor patients than in those who are white, younger, and have higher household income. In addition, there is considerable geographic variability in LDKT rates. Concomitantly, in recent years, the rate of living kidney donation (LKD) has stopped increasing and is declining, after decades of consistent growth. Particularly noteworthy is the decline in LKD among black, younger, male, and lower-income adults. The Live Donor Community of Practice within the American Society of Transplantation, with financial support from 10 other organizations, held a Consensus Conference on Best Practices in Live Kidney Donation in June 2014. The purpose of this meeting was to identify LKD best practices and knowledge gaps that might influence LDKT, with a focus on patient and donor education, evaluation efficiencies, disparities, and systemic barriers to LKD. In this article, we discuss trends in LDKT/LKD and emerging novel strategies for attenuating disparities, and we offer specific recommendations for future clinical practice, education, research, and policy from the Consensus Conference Workgroup focused on disparities.