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Research involving the recently deceased: ethics questions that must be answered

Parent, Brendan; Kates, Olivia S; Arap, Wadih; Caplan, Arthur; Childs, Brian; Dickert, Neal W; Homan, Mary; Kinlaw, Kathy; Lang, Ayannah; Latham, Stephen; Levan, Macey L; Truog, Robert D; Webb, Adam; Root Wolpe, Paul; Pentz, Rebecca D
Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria-or 'research involving the recently deceased'-can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor's legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of tissue donation and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically.
PMID: 38071588
ISSN: 1473-4257
CID: 5589392

Using Social Media to Promote Cutting-edge Research in Transplantation: Results of an International Survey

Atif, Mo; Kaplow, Katya N; Akhtar, Jasmine M; Sidoti, Carolyn N; Li, Jennifer; Au, Eric H K; Baan, Carla C; Levan, Macey L
PMID: 37309031
ISSN: 1534-6080
CID: 5613922

Artificial intelligence-based clinical decision support for liver transplant evaluation and considerations about fairness: A qualitative study

Strauss, Alexandra T; Sidoti, Carolyn N; Sung, Hannah C; Jain, Vedant S; Lehmann, Harold; Purnell, Tanjala S; Jackson, John W; Malinsky, Daniel; Hamilton, James P; Garonzik-Wang, Jacqueline; Gray, Stephen H; Levan, Macey L; Hinson, Jeremiah S; Gurses, Ayse P; Gurakar, Ahmet; Segev, Dorry L; Levin, Scott
BACKGROUND:The use of large-scale data and artificial intelligence (AI) to support complex transplantation decisions is in its infancy. Transplant candidate decision-making, which relies heavily on subjective assessment (ie, high variability), provides a ripe opportunity for AI-based clinical decision support (CDS). However, AI-CDS for transplant applications must consider important concerns regarding fairness (ie, health equity). The objective of this study was to use human-centered design methods to elicit providers' perceptions of AI-CDS for liver transplant listing decisions. METHODS:In this multicenter qualitative study conducted from December 2020 to July 2021, we performed semistructured interviews with 53 multidisciplinary liver transplant providers from 2 transplant centers. We used inductive coding and constant comparison analysis of interview data. RESULTS:Analysis yielded 6 themes important for the design of fair AI-CDS for liver transplant listing decisions: (1) transparency in the creators behind the AI-CDS and their motivations; (2) understanding how the AI-CDS uses data to support recommendations (ie, interpretability); (3) acknowledgment that AI-CDS could mitigate emotions and biases; (4) AI-CDS as a member of the transplant team, not a replacement; (5) identifying patient resource needs; and (6) including the patient's role in the AI-CDS. CONCLUSIONS:Overall, providers interviewed were cautiously optimistic about the potential for AI-CDS to improve clinical and equitable outcomes for patients. These findings can guide multidisciplinary developers in the design and implementation of AI-CDS that deliberately considers health equity.
PMID: 37695082
ISSN: 2471-254x
CID: 5635362

The Transplantgram Revolution: Instagram's Influence on the Perception and Promotion of Organ Transplantation [Letter]

Levan, Macey L; Klitenic, Samantha B; Patel, Suhani S; Akhtar, Jasmine M; Nemeth, Denise V; Jones, Devyn; Massie, Allan B; Segev, Dorry L
PMID: 37749818
ISSN: 1534-6080
CID: 5609542

TikTok and Transplantation: A Trending Opportunity [Letter]

Levan, Macey L; Klitenic, Samantha B; Patel, Suhani S; Akhtar, Jasmine M; Nemeth, Denise V; Jones, Devyn M; Massie, Allan B; Segev, Dorry L
PMID: 37287107
ISSN: 1534-6080
CID: 5597862

Ethical and Psychosocial Factors in the Decision-Making and Informed Consent Process for Upper Extremity Vascularized Composite Allotransplantation: A Mixed-Methods Study

Gordon, Elisa J.; Gacki-Smith, Jessica; Kuramitsu, Brianna R.; Downey, Max; Vanterpool, Karen B.; Nordstrom, Michelle J.; Riggleman, Tiffany; Cooney, Carisa M.; Jensen, Sally; Dumanian, Gregory; Tintle, Scott; Levan, MacEy; Brandacher, Gerald
Background. Although upper extremity (UE) vascularized composite allotransplantation (VCA) aims to improve quality of life, relatively few have been performed worldwide to support evidence-based treatment and informed decision-making. Methods. We qualitatively examined factors contributing to anticipated and actual decision-making about UE VCA and perceptions of the elements of informed consent among people with UE amputations, and UE VCA candidates, participants, and recipients through in-depth interviews. Thematic analysis was used to analyze qualitative data. Results. Fifty individuals participated; most were male (78%) and had a mean age of 45 y and a unilateral amputation (84%). One-third (35%) were "a lot"or "completely"willing to pursue UE VCA. UE VCA decision-making themes included the utility of UE VCA, psychosocial impact of UE VCA and amputation on individuals' lives, altruism, and anticipated burden of UE VCA on lifestyle. Most respondents who underwent UE VCA evaluation (n = 8/10) perceived having no reasonable treatment alternatives. Generally, respondents (n = 50) recognized the potential for familial, societal, cultural, medical, and self-driven pressures to pursue UE VCA among individuals with amputations. Some (n = 9/50, 18%) reported personally feeling "a little,""somewhat,""a lot,"or "completely"pressured to pursue UE VCA. Respondents recommended that individuals be informed about the option of UE VCA near the amputation date. Conclusions. Our study identified psychosocial and other factors affecting decision-making about UE VCA, which should be addressed to enhance informed consent. Study participants' perceptions and preferences about UE VCA suggest re-examination of assumptions guiding the UE VCA clinical evaluation process.
ISSN: 2373-8731
CID: 5567902

Factors enabling transplant program participation in the Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective: A national survey

Lentine, Krista L; Dew, Mary Amanda; Xiao, Huiling; Wisniewski, Addie; Levan, Macey L; Al Ammary, Fawaz; Sharfuddin, Asif; Axelrod, David A; Waterman, Amy D; Kasiske, Bertram
BACKGROUND:The Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective (LDC), the first effort to create a lifetime registry for living donor candidates in the United States, requires transplant programs to register donor candidates while the SRTR conducts follow-up. METHODS:To better understand facilitators and barriers to program participation, we conducted a brief electronic survey of U.S. transplant program staff from October 26, 2021 to December 17, 2021. RESULTS:We received 132 responses, with at least one response from 87 living donor programs (46 kidney programs, 33 kidney and liver programs, and eight liver programs alone). We found 86% of program representatives strongly agreed or agreed that funding adequate to cover the cost of data collection would facilitate LDC participation, 92% agreed or strongly agreed with importance of electronic data submission options, and 74% reported that elimination of requirements to submit duplicative pre-operative information to the Organ Procurement and Transplantation Network (OPTN) would be helpful. Other potentially enabling factors include reduction in duration of OPTN postdonation follow-up requirements, ease-of-use, protection from data use for regulation, adequate data security, and equity in data access. CONCLUSION:This survey identifies potential targets to strengthen participation in the effort to create a national living donor registry in the United States. Collaboration and investment to overcome barriers to LDC participation among transplant programs are vital to generate long-term data on living donation for donor candidates, donors, and patients in need of transplant.
PMID: 36622257
ISSN: 1399-0012
CID: 5480352

Factors impacting the medication "Adherence Landscape" for transplant patients

Bendersky, Victoria A; Saha, Amrita; Sidoti, Carolyn N; Ferzola, Alexander; Downey, Max; Ruck, Jessica M; Vanterpool, Karen B; Young, Lisa; Shegelman, Abigail; Segev, Dorry L; Levan, Macey L
BACKGROUND:Medication non-adherence contributes to post-transplant graft rejection and failure; however, limited knowledge about the reasons for non-adherence hinders the development of interventions to improve adherence. We conducted focus groups with solid organ transplant recipients regarding overlooked challenges in the process of transplant medication self-management and examined their adherence strategies and perceptions towards the post-transplant medication regimen. METHODS:We conducted four focus groups with n = 31 total adult transplant recipients. Participants had received kidney, liver, or combined liver/kidney transplant at Johns Hopkins Hospital between 2014 and 2019. Focus groups were audio-recorded and transcribed. Transcripts were analyzed inductively, using the constant comparative method. RESULTS:Responses generally fell into two major categories: (1) barriers to adherence and (2) "adherence landscape". We define the former as factors directly labeled as barriers to adherence by participants and the latter as factors that heavily influence the post-transplant medication self-management process. CONCLUSIONS:We propose a shift in the way healthcare providers and researchers, address the question of medication non-adherence. Rather than asking why patients are non-adherent, we suggest that constructing and understanding patients' "adherence landscape" will provide an optimal way to align the goals of patients and providers and boost health outcomes.
PMID: 36950850
ISSN: 1399-0012
CID: 5462852

A Patient-Centered Website (Within Reach) to Foster Informed Decision-making About Upper Extremity Vascularized Composite Allotransplantation: Development and Usability Study

Vanterpool, Karen B; Gacki-Smith, Jessica; Kuramitsu, Brianna; Downey, Max; Nordstrom, Michelle J; Luken, Michelle; Riggleman, Tiffany; Fichter, Shannon; Altema, Withney; Brucker, James B; Cooney, Carisa M; Dumanian, Gregory; Jensen, Sally; Levan, Macey; Tintle, Scott M; Brandacher, Gerald; Gordon, Elisa J
BACKGROUND:Upper extremity (UE) vascularized composite allotransplantation (VCA; hand transplantation) is a reconstructive treatment option for patients with UE loss. Approximately 37 UE VCAs have been performed in the United States to date; thus, little is known about long-term psychosocial outcomes and whether the benefits outweigh the risks. To make an informed treatment decision, patients must understand the procedure, risks, and potential benefits of UE VCA. However, few educational resources are publicly available providing unbiased, comprehensive information about UE VCA. OBJECTIVE:This paper described the development of a neutral, and accessible, educational website supporting informed decision-making about UE VCA as a treatment option for individuals with UE amputations. METHODS:Website content development was informed by 9 focus groups conducted with individuals with UE amputations at 3 study sites. After initial website development, we conducted usability testing to identify ways to improve navigability, design, content, comprehension, and cultural sensitivity. Participants were administered the After-Scenario Questionnaire to assess user performance after completing navigational tasks, System Usability Scale to measure the perceived usability of the website, and Net Promoter Score to measure user satisfaction. Quantitative data were analyzed using descriptive statistics. Qualitative data were analyzed using rapid thematic analysis. RESULTS:A total of 44 individuals with UE amputations participated in focus groups (n=37, 84%) and usability testing (n=14, 32%). Most participants in the focus groups and usability testing were male (24/37, 65% and 11/14, 79%, respectively) and White (27/37, 73% and 9/14, 64%, respectively), had unilateral limb loss (22/37, 59% and 12/14, 86%, respectively), and had mean ages of 48 (SD 9.2) and 50 (SD 12.0) years, respectively. Focus group results are organized into accessibility, website design, website development, website tone and values, sitemap, terminology, images and videos, and tables and graphics. Usability testing revealed that participants had a positive impression of the website. The mean After-Scenario Questionnaire score of 1.3 to 2.3 across task scenarios indicated high satisfaction with website usability, the mean System Usability Scale score of 88.9 indicated user satisfaction with website usability, and the mean Net Promoter Score of 9.6 indicated that users were enthusiastic and would likely refer individuals to the website. CONCLUSIONS:The findings suggest that our educational website, Within Reach, provides neutral, patient-centered information and may be a useful resource about UE VCA for individuals with UE amputations, their families, and health care professionals. Health care professionals may inform UE VCA candidates about Within Reach to supplement current VCA education processes. Within Reach serves as a resource about treatment options for patients preparing for scheduled or recovering from traumatic UE amputations. Future research should assess whether Within Reach improves knowledge about UE VCA and enhances informed decision-making about UE VCA as a treatment option.
PMID: 36749618
ISSN: 2561-326x
CID: 5480362

Transplantation Amid a Pandemic: The Fall and Rise of Kidney Transplantation in the United States

Bisen, Shivani S; Zeiser, Laura B; Boyarsky, Brian; Werbel, William; Snyder, Jon; Garonzik-Wang, Jacqueline; Levan, Macey L; Segev, Dorry L; Massie, Allan B
UNLABELLED:Following the outbreak of coronavirus disease 2019 (COVID-19) in the United States, the number of kidney waitlist additions and living-donor and deceased-donor kidney transplants (LDKT/DDKT) decreased substantially but began recovering within a few months. Since then, there have been several additional waves of infection, most notably, the Delta and Omicron surges beginning in August and December 2021, respectively. METHODS/UNASSIGNED:Using SRTR data, we compared observed waitlist registrations, waitlist mortality, waitlist removal due to deteriorating condition, LDKT, and DDKT over 5 distinct pandemic periods to expected events based on calculations from preepidemic data while accounting for seasonality and secular trends. RESULTS/UNASSIGNED:). CONCLUSIONS/UNASSIGNED:Despite exceptionally high COVID-19 incidence during the Omicron wave, the transplant system responded similarly to prior waves that imposed a lesser disease burden, demonstrating the transplant system's growing adaptations and resilience to this now endemic disease.
PMID: 36582674
ISSN: 2373-8731
CID: 5480342