Faculty Bibliography

BACKGROUND:Organ Procurement and Transplantation Network (OPTN) policy requires 2 years of follow-up for living kidney donors (LKDs); however, many transplant hospitals struggle to meet this requirement. We developed and tested a mobile health (mHealth) system for LKD follow-up in a pilot randomized-controlled trial (RCT). METHODS:LKDs were randomly assigned to either the intervention (mHealth + standard of care) or control arm (standard of care). We assessed OPTN policy-defined completeness and timeliness of 6-month, 1-year, and 2-year follow-ups. Four hundred LKDs were enrolled in the study (June 2018 to February 2021). RESULTS:At 6-month follow-up, a higher proportion of the intervention arm participants completed composite visits (97.5% vs. 91.5%, p = 0.01). Both arms had similar compliance rates at 1- and 2-year follow-up (92.0% vs. 89.5%, p = 0.49, and 66.5% vs. 65.0%, p = 0.83). Intervention arm participants completed 6-month follow-up 11 days earlier than their counterparts (p = 0.009). CONCLUSION/CONCLUSIONS:mHealth technologies improved 6-month follow-up, but did not impact 1- and 2-year LKD follow-up in this single-center RCT. Other strategies, such as providing services beyond data collection, may be necessary to improve donor engagement and support LDK's long-term follow-up.

With U.S. Food and Drug Administration (FDA) clearance of clinical trials of kidney xenotransplantation (XTx) in living humans, understanding the recipient experience is critical. Semi-structured interviews with the three living XTx recipients identified core domains of the recipient experience, including quality of life (QoL), fears about XTx, and healthcare team communication and support. Transcribed interviews were analyzed by two qualitative researchers using an inductive thematic approach and were mapped onto the Warwick Patient Experience Model, a validated framework to assess key aspects of patient satisfaction with the healthcare experience. All three recipients (53-year-old female; 66-year-old male; 54-year old male) described a restoration of hope, contrasted with their poor quality of life on dialysis. They emphasized that access to XTx and graft survival requires mutual confidence and commitment between recipients and healthcare teams. XTx recipients use dialysis as a point of reference when describing changes in their post-transplant QoL and seemed well-situated to handle the possibility of graft failure. These insights may aid in the creation of decision aids and educational materials tailored to the specific needs of XTx recipients.

Community input enhances the impact of research. Yet, there are challenges when eliciting community perspectives in nephrology/transplant research: recruitment of patients across a wide spectrum of familiarity with kidney disease; a lack of trust from marginalized patients because of health care barriers, institutionalized structural racism, and historical harm; and retention of members facing high burden of care. To address these challenges, we drafted a mission and formed a community advisory board to provide input on nephrology/transplant research. We worked with kidney disease community organizations that prioritize diversity and equity to recruit members with chronic kidney disease, end-stage kidney disease, or a kidney transplant, as well as nephrology/transplant caregivers and kidney donors. We formed a diverse group of 9 members and received feedback on 5 research proposals over 4 quarterly meetings, bridging a communication gap between community perspectives and researchers. The collaborative environment stimulated feedback that improved our nephrology/transplant research to reflect the perspectives of those most affected by research findings. Eight members have remained active for more than 1 year. In this collaborative paper, we describe our process of forming a nephrology/transplant community advisory board, and participants highlight the benefits of sharing their lived experiences to improve and amplify the impact of nephrology/transplant research.

BACKGROUND:Transplant waitlist registrants in the United States may be delisted because of receipt of a transplant abroad. Although not universally unethical, "travel for transplantation" poses risks to posttransplant care. To better understand this phenomenon, this study identifies temporal trends, geographic patterns, and demographic factors associated with cross-border transplantation. METHODS:Using Scientific Registry of Transplant Recipients data, we identified 818 US waitlist candidates who were removed because of transplantation abroad between 2010 and 2023. We described recipient characteristics overall, by organ, and by top transplant destinations. We used a Cox regression framework to identify characteristics associated with waitlist removal due to transplantation abroad. RESULTS:Transplants abroad averaged 58.4 per year. Incidence peaked at 80 transplants in 2017, with an upward trend after 2021. Kidney transplants made up 92.1% of cases. The most common destinations were the Philippines (19.8%), India (16.5%), Mexico (9.4%), China (8.4%), and Iran (4.4%). India and Mexico experienced the smallest drop-off during the height of the COVID-19 pandemic 2020-2021. Most recipients were US citizens (65.0%) or residents (23.5%). Female (adjusted hazard ratio [aHR], 0.520.610.71; P < 0.001) and Black candidates (aHR, 0.120.180.26; P < 0.001) were less likely to travel abroad compared with Asian candidates (aHR, 5.927.108.52; P < 0.001). Nonresidents (aHR, 6.708.6911.26; P < 0.001) and, among registrations in 2012 or later, nonresidents who traveled to the United States for transplantation (aHR, 27.2738.9155.50; P < 0.001) had a greater chance of undergoing transplantation abroad. CONCLUSIONS:Understanding patterns of international travel for transplantation is key not only for preventing resource drains from destination countries but also for providing adequate posttransplant care for recipients.

Research shows that donor families report feeling abandoned, lacking social support, and receiving insufficient aftercare services. To meet the needs of these families, Taylor's Gift Foundation developed a free, virtual grief support program that pairs participating donor family members with Caring Guides trained in assertive community engagement and offers peer-facilitated support groups. Project Aim: The aim was to assess participant experiences with Taylor's Gift Foundation grief support program to understand its impact on grief symptoms, donor family access to grief support, and perceived social support. Design: Researchers conducted a qualitative evaluation using semi-structured interviews with 21 program participants. Results were analyzed using rapid qualitative analysis and descriptive statistics. Results: Eighteen (86%) participants worked with Caring Guides, 12 (57%) attended an average of 7 support groups, and 8 (39%) worked with Caring Guides and attended support groups. Eleven (52%) program participants reported difficulties accessing mental health services. Most program participants (86%) reported a decrease in grief intensity since enrolling in the program. Conclusion: Effective aftercare services were critical in helping donor families cope with, and adapt to, their loss. The Taylor's Gift Foundation grief support program helped donor family members access otherwise inaccessible grief support services and provided a valuable means of social support.