Faculty Bibliography

BACKGROUND:The HIV (human immunodeficiency virus) Organ Policy Equity (HOPE) Act legalized transplantation from both living and deceased donors with HIV to recipients with HIV (HIV D+/R+). Since its enactment, only a few living organ donations from people with HIV (PWH) have occurred compared to more deceased donations. The study aims to understand the perspectives of infectious disease providers and their awareness of HIV-positive donors with a reactive status (HIV D+/R+) to inform the practice, as kidney and liver transplants from these donors can now be conducted outside of research protocols. METHODS:Semi-structured interviews were conducted with infectious disease providers (n = 18) from October 2023 to March 2024 to assess their perceptions and knowledge of HIV D+/R+ living organ donation. Inductive thematic analysis was conducted to identify major themes. RESULTS:Most providers had a positive view of HIV D+/R+ living donation, noting its potential to expand the donor pool, reduce wait times, and reduce stigma surrounding organ transplantation for PWH. However, they expressed concerns about the long-term outcomes of donors and emphasized the importance of thorough evaluations, including assessments of the disease stage and comorbidities. Additionally, providers mentioned that they had limited knowledge of the HIV D+/R+ donation process and highlighted the need for educational resources and establishing formal relationships with transplant programs. CONCLUSIONS:The study findings highlight the need for evidence-based information resources for healthcare providers on HIV D+/R+ living donations.

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.

Racial/ethnic disparities in the deceased organ donor referral process may contribute to the organ shortage and place minority communities at a greater disadvantage. Prior literature cites substantial inequalities, though methodological concerns may bias estimates. Using Organ Retrieval and Collection of Health Information for Donation data, we conducted a simulation study and re-analysis of 132,968 referrals 2015-2021 across six organ procurement organizations (OPOs). We excluded brain death declaration and cause/mechanism/circumstances of death from the approach model and conducted Poisson regression with robust standard errors. We found Black patients were approached at a more similar rate relative to White patients, although disparities remained (incidence rate ratio (IRR): _0.910.94_0.97). Black patients provided authorization at a 31% lower rate than White patients (IRR: _0.670.69_0.71). Slight disparities were observed at procurement (IRR: _0.940.96_0.99). Our findings are directionally similar to prior literature but suggest substantially less inequality (vs 23% and 65% higher risk of approach and authorization, for non-Black vs Black referrals). Accurate quantification of racial/ethnic disparities in transplantation impacts public perception of those involved, particularly OPOs, and is paramount to any study. Importantly, continued measures are needed to promote equality among Black and minority patients in our national organ donation and transplant system.

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.

BACKGROUND:Parents of pediatric heart transplant (HTx) recipients have a unique perspective on the challenges associated with the transition into adult care networks. We sought to assess parental perceptions of the challenges pediatric HTx recipients face daily and parental concerns around the transition from pediatric care networks. METHODS:A 15-item online survey was developed in partnership with parent-stakeholders and administered to parents of pediatric HTx recipients in September 2023. Closed and open-ended questions assessed (1) the patients' diagnosis, age at diagnosis, and age at transplant, (2) parents' daily concerns about their child's well-being, (3) parents' overall concerns about their child's well-being as they transition into adulthood, (4) parents' perceptions of their child's quality-of-life (QoL) and health, and (5) parents' demographic characteristics. RESULTS:Eighty-six parents completed the survey. On a scale of 1 (worst) to 10 (best), 75% of parents rated their child's overall QoL at 8 or higher and 76% rated their child's health-related QoL at 8 or higher. Parents' daily concerns about their child's well-being included infectious diseases, health behaviors and care management, transplant-related concerns, socialization and education, mental health, and care coordination. Concerns related to the transition into adulthood included health behaviors and self-management, life satisfaction, finances, family, transplant-related concerns, and care coordination. CONCLUSIONS:Although parents of pediatric HTx recipients reported mostly positive QoL outcomes, they have concerns related to care management, life satisfaction, and healthcare access as their children transition into adulthood. Comprehensive transition-specific interventions and guidelines are needed to support families during this high-risk period.

INTRODUCTION/BACKGROUND:Dialysis social workers (DSWs) educate and advocate for end-stage kidney disease (ESKD) patients during the kidney transplantation (KT) process. However, little is known about the barriers DSWs face as they help patients get waitlisted and how to best support their efforts. We interviewed DSWs across New York (NY) State to examine their experiences, supports, and challenges in helping dialysis patients progress through KT education, referral, and evaluation. METHODS:We conducted semi-structured interviews with DSWs in NY State who had participated or expressed interest in a program designed to educate DSWs about KT and used rapid qualitative analysis to identify themes. FINDINGS/RESULTS:We interviewed 17 DSWs. Seven themes emerged: (1) DSWs report involvement in KT interest assessment, education, referral, and evaluation support, (2) DSWs report varying nephrologist support in helping patients progress to KT, (3) DSWs perceive social support and adherence as key factors in KT centers' eligibility determinations, (4) DSWs have knowledge gaps around living donation and appreciate learning about KT from transplant centers and non-profit organizations, (5) Patients express KT concerns and DSWs counsel them about these concerns, (6) DSWs report solutions to help patients complete KT evaluation appointments, and (7) DSWs report communication deficiencies between dialysis centers and transplant centers, and patients. CONCLUSIONS:Education for DSWs, support from nephrologists, and resources to help patients complete KT evaluation steps facilitated DSW engagement throughout the pre-transplant process, underscoring the need for multi-level, cross-disciplinary programs to support these efforts.