Faculty Bibliography

BACKGROUND/UNASSIGNED:During the last 20 years, the novel and highly visible nature of facial transplantation (FT) has posed a dual and potentially conflicting obligation for FT programs: to disseminate findings for scientific advancement while respecting recipients' preferences for privacy, given the significant public and media attention. The individually identifying nature of FT is not present in other forms of vascularized composite allotransplantation, making it unique. Despite extensive ethical discourse on FT, implications for privacy are largely absent from ethical analyses. METHODS/UNASSIGNED:This conceptual analysis assesses the complex ethical implications associated with privacy in FT and offers guidance to FT programs for navigating concerns related to donors, recipients, and their families. A literature review was performed and supplemented by our institutional experience. RESULTS/UNASSIGNED:Ethical approaches to privacy require balancing the conflicting ethical principles at the center of this dual obligation. Patient-centered strategies should include comprehensive psychological screening to understand patients' goals for care, informed consent that clearly addresses the dissemination of information and media involvement, and control of media coverage until the recipient is ready and willing. Public relations support for recipients has been helpful in our institution's experience. Additional community-based strategies include educational outreach interventions to satisfy public curiosity. CONCLUSIONS/UNASSIGNED:Findings from published reports alongside our institution's experience suggest that a nuanced, multifaceted approach is essential to navigate the ethical complexities of privacy in FT. Aligning key stakeholders to support FT recipients' well-being while maintaining scientific integrity reflects the ethical tension between duties to patients and obligations to advance transplant science.

BACKGROUND/UNASSIGNED:Many strides have been made in the field of vascular composite allotransplantation, and some vascular composite allotransplantation procedures, including upper extremity and facial transplantation, are arguably nearing the standard of care for adult recipients. Although centers devoted to pediatric upper extremity transplantation have been established, very little recent scholarship has addressed the advisability of initiating pediatric facial transplantation (PFTx). METHODS/UNASSIGNED:This conceptual ethical analysis assesses the present risks and benefits associated with PFTx based on a review of the literature combined with our team's clinical experience. RESULTS/UNASSIGNED:Considerations for PFTx include anticipated improvements in quality of life and social integration during a critically important formative developmental phase, ongoing risks associated with immunosuppression and known challenges with nonadherence in adolescent and young adult populations, unknowns about facial growth and continued incorporation of the allograft, the likelihood of need for retransplantation, and issues around decisional capacity and the ability to provide informed consent. CONCLUSIONS/UNASSIGNED:Weighing the risks and benefits of PFTx, particularly the risks associated with long-term immunosuppression and the likely need for retransplantation, we believe that the reservations are such that pediatric patients should not be considered candidates for PFTx at this time.

INTRODUCTION/BACKGROUND:Media messaging offers insight into the informational context that may shape the public's acceptance of xenotransplantation (XTx). The purpose of this study was to characterize the media's portrayal of the initiation of contemporary in-human XTx and assess both the accuracy and the ethical valence of XTx messaging. METHODS:This study employed a summative qualitative content analysis of online print media coverage of the first contemporary experimental pig-to-human transplants in the United States. A comprehensive search of the 50 most-trafficked online news sources in the US was conducted for print articles pertaining to XTx published between July 13, 2021 and July 13, 2022. All articles in the sample were coded using qualitative data analysis software. Using a combined deductive and inductive approach to analysis, codes were grouped into topical categories representing patterns of meaning and subsequently interpreted into overarching themes. RESULTS:The search yielded 208 unique print-based articles. The top five most prevalent codes were "genetically modified," "reference to animal organ," "XTx rejection possibility," "novelty of the procedure," and "XTx as a 'success'/extending life." Code patterns were interpreted into the following overarching themes: (1) value judgments about XTx, (2) justifications for XTx, and (3) emphasis on technical details. CONCLUSIONS:Results suggest that media reporting on XTx during this time period frequently employed incomplete and hyperbolic narratives to support and justify XTx. As the field of XTx evolves with the initiation of human clinical trials, efforts to communicate accurate, balanced information to the general public should be prioritized.

Cleft lip and/or palate (CL/P) is a life-long condition that requires multidisciplinary care throughout childhood and beyond. Studies have examined the impact of CL/P on psychosocial outcomes including lower self-esteem, higher incidence of bullying, social isolation, and rejection. As a result, patients may be predisposed to experiencing mood disorders or trauma related to their facial difference. Moreover, access to dedicated cleft centers is limited in many areas in the United States. For children with a CL/P who present to the healthcare system, evaluating for trauma symptoms and incorporating trauma-informed care can support these patients' psychosocial wellbeing during an impressionable developmental 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.

Religious viewpoints have been shown to influence the ways in which many persons approach medical decision-making and have been noted as a potential barrier to xenotransplantation acceptance. This study sought to explore how attitudes toward xenotransplantation differ among various religious beliefs. A national Likert-scale survey was conducted in 2023 with a representative sample in the United States. Religious belief was self-reported. Regression analysis was used to identify associations with religious belief and hesitations about xenotransplantation. Five thousand and eight individuals across the United States responded to the survey. The two biggest concerns about xenotransplantation across religious groups were the current lack of evidence about success and the risk of xenozoonosis. Although they still expressed concerns about certain issues, Catholic and Muslim respondents were most comfortable with xenotransplantation for all. On average, the risk of xenozoonosis was a concern among 25% across all religious beliefs (p <0.0001). Orthodox Christians expressed the highest rate of negative feelings toward the recent xenotransplantation experiments on brain dead and living individuals. Those who reported no religion were most likely to have negative feelings about killing pigs for human organ transplant (OR 1.26; 95% CI: 1.08-1.46). As xenotransplantation progresses from pre-clinical studies to clinical trials, and potentially to clinical therapy, hesitations among religious groups exist. Specific studies should be designed to investigate how religious viewpoints can affect xenotransplantation acceptance.

BACKGROUND/UNASSIGNED:Ventral hernia repair (VHR) is a common procedure performed on a comorbid patient population at risk for complications, necessitating effective preoperative risk assessment. Previous research suggests that frailty better predicts adverse outcomes compared with historical risk proxies including age. We examined the association between frailty as measured by the 5-factor modified frailty index and postoperative complications following VHR as reported in the National Surgical Quality Improvement Program database. METHODS/UNASSIGNED:value less than 0.05 was considered statistically significant. RESULTS/UNASSIGNED:A total of 14,575 patients were identified. Frailty was a significant predictor of all-cause complications, readmission, reoperation, and increasing length of stay. Increased age was a significant predictor for length of stay and severe systemic complications. Smoking status and American Society of Anesthesiologists class of 4 were associated with all outcomes. Body mass index predicted surgical site complications and reoperation. CONCLUSIONS/UNASSIGNED:Frailty can predict many postoperative complications of VHR with component separation technique and is an important element of risk prediction for potential surgical candidates.

RATIONALE & OBJECTIVE/OBJECTIVE:Despite substantial growth in the population of older adults with kidney disease, there remains a lack of evidence to guide clinical care for this group. The Kidney Disease and Aging Research Collaborative (KDARC) conducted a Delphi study to build consensus on research priorities for clinical geriatric nephrology. STUDY DESIGN/METHODS:Asynchronous modified Delphi study. SETTING & PARTICIPANTS/METHODS:Clinicians and researchers in the US and Canada with clinical experience and/or research expertise in geriatric nephrology. OUTCOME/RESULTS:Research priorities in geriatric nephrology. ANALYTICAL APPROACH/METHODS:In the first Delphi round, participants submitted free-text descriptions of research priorities considered important for improving the clinical care of older adults with kidney disease. Delphi moderators used inductive content analysis to group concepts into categories. In the second and third rounds, participants iteratively reviewed topics, selected their top 5 priorities, and offered comments used to revise categories. RESULTS:Among 121 who were invited, 57 participants (47%) completed the first Delphi round and 48 (84% of enrolled participants) completed all rounds. After 3 rounds, the 5 priorities with the highest proportion of agreement were: 1) Communication and Decision-Making about Treatment Options for Older Adults with Kidney Failure (69% agreement), 2) Quality of Life, Symptom Management, and Palliative Care (67%), 3) Frailty and Physical Function (54%), 4) Tailoring Therapies for Kidney Disease to Specific Needs of Older Adults (42%), and 5) Caregiver and Social Support (35%). Health equity and person-centricity were identified as cross-cutting features that informed all topics. LIMITATIONS/CONCLUSIONS:Relatively low response rate and limited participation by private practitioners and older clinicians and researchers. CONCLUSIONS:Experts in geriatric nephrology identified clinical research priorities with the greatest potential to improve care for older adults with kidney disease. These findings provide a roadmap for the geriatric nephrology community to harmonize and maximize the impact of research efforts.