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Into Adulthood: Assessing Parental Perceptions and Concerns for Pediatric Heart Transplant Recipients Around the Transition Into Adult Care

Kaplow, Katya; Downey, Max C; Donnelly, Conor; Hillenburg, Joseph P; McQueen, Melissa; Anderson, Kathleen; Cousino, Melissa K; Varma, Manu; Singh, Rakesh K; Sidoti, Carolyn N; Massie, Allan B; Segev, Dorry L; Levan, Macey L
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.
PMID: 40087837
ISSN: 1399-3046
CID: 5812762

Trials and Tribulations: Responses of ChatGPT to Patient Questions About Kidney Transplantation

Xu, Jingzhi; Mankowski, Michal; Vanterpool, Karen B; Strauss, Alexandra T; Lonze, Bonnie E; Orandi, Babak J; Stewart, Darren; Bae, Sunjae; Ali, Nicole; Stern, Jeffrey; Mattoo, Aprajita; Robalino, Ryan; Soomro, Irfana; Weldon, Elaina; Oermann, Eric K; Aphinyanaphongs, Yin; Sidoti, Carolyn; McAdams-DeMarco, Mara; Massie, Allan B; Gentry, Sommer E; Segev, Dorry L; Levan, Macey L
PMID: 39477825
ISSN: 1534-6080
CID: 5747132

The Economic Value of Volunteers Directing and Managing the US Organ Donation and Transplantation System

Levan, Macey L; Flower, Tessa L; Massie, Allan B; LaPointe Rudow, Dianne; Sidoti, Carolyn N; Formica, Richard N; Ratner, Lloyd E
PMID: 39865535
ISSN: 1534-6080
CID: 5780492

A scoping review of the legal and ethical challenges with the use of normothermic regional perfusion in controlled donation after circulatory determination a death from 2005-2023

da Graca, Briget; Snoddy, Matthew; Fischbach, Conner; Ramakrishnan, Sudha; Levan, Macey L; Parent, Brendan; Testa, Giuliano; Wall, Anji
Use of normothermic regional perfusion (NRP) to enable organ reconditioning and assessment in donation after circulatory determination of death (DCD) is controversial. We conducted a scoping review of peer-reviewed articles, news media, legal literature, and professional society position statements addressing ethical and/or legal issues in use of NRP in controlled DCD from January 1, 2005 to January 5, 2024. Thematic analysis, assessing the four principles of bioethics (autonomy, beneficence, non-maleficence, and justice) and sub-themes identified within each, was conducted for the 112 publications meeting inclusion criteria. More than 30 publications addressed the topic in each of 2022 and 2023, versus ≤6 per year previously. Non-maleficence was the most frequently addressed bioethical principle (111/112 publications), and most varied, with 14 subthemes. Attitudes towards NRP differed by type of NRP: Of 72 publications discussing thoracoabdominal NRP, 22 (30.6%) were 'In Favor', 39 (54.2%) 'Neutral', and 11 (15.3%) 'Against'; of 44 discussing abdominal NRP, 23 (52.3%) were 'In Favor', 20 (45.5%) 'Neutral', and 1 (2.3%) 'Against'. Attitudes differed by authors' country, degree, and affiliation, and by clinical focus of the publishing journal. Overall, our review shows the ethical and legal issues raised by NRP remain unresolved, and debate centered on non-maleficence.
PMID: 39216689
ISSN: 1600-6143
CID: 5687502

Second Time Around: Increased Rate of Living Donation From Repeat Organ Donors

Sidoti, Carolyn N; Terlizzi, Kelly; Donnelly, Conor; Jaffe, Ian S; Motter, Jennifer D; Philosophe, Benjamin; Jenkins, Reed T; Hussain, Sarah; Colon, Pedro; Tevar, Amit D; Lonze, Bonnie E; Orandi, Babak J; Levan, Macey L; Segev, Dorry L; Massie, Allan B
INTRODUCTION/BACKGROUND:Some living organ donors will decide to donate again at a later date. Evidence has indicated that this practice may have increased in recent years. We evaluated the incidence and outcomes of this practice to inform counseling of potential repeat donors. METHODS:Using SRTR data from 1994 to 2023, we identified 220 repeat living donors and their 415 recipients. We constructed donor comparison groups using weighting by the odds. We described clinical and lab results at 6 months, 1 year, and 2 years post-donation separately for kidney-second donors and liver-second donors. We compared all-cause graft failure for their recipients with those of comparison donors. RESULTS:The annual count of repeat living donors increased from 5 in 2018 to 25 in 2019 (p < 0.001). Of 220 donors, 159 were liver-second donors (72.3%) and 55 were kidney-second donors (25.0). The percentage of nondirected donations increased from 30.5% at first donation to 53.2% at second donation (p < 0.001). Liver-second donors had one death approximately 2.5 years post-donation. Seventeen were re-admitted and 20 experienced complications requiring an interventional procedure or re-operation. Among kidney-second donors, no deaths, re-admissions, or post-donation complications were reported. Post-donation outcomes in both groups were comparable when evaluated against organ-specific comparison donors. Recipients of repeat living donors experienced graft survival similar to recipients of comparison donors. CONCLUSIONS:Repeat living donation may be a safe practice for carefully selected living donors in the short term; however, long term safety is unknown. Outcomes for recipients are similar to recipients of comparison donors.
PMID: 39761363
ISSN: 1399-0012
CID: 5804912

Empowering the Voice of Patients, Families, and Caregivers Through Participation in Organ Donation and Transplantation Conferences

Levan, Macey L; Gragossian, Alin
PMID: 39686649
ISSN: 2164-6708
CID: 5764292

Deficits in Pre- and Post-transplant Functional, Motor, and Cognitive Deficits Associated With Graft Failure and Mortality in Pediatric Heart Transplant Recipients

Donnelly, Conor; Patel, Suhani S; Chiang, Teresa Po-Yu; Liyanage, Luckmini; Long, Jane J; Levan, Macey L; Varma, Manu R; Singh, Rakesh K; Segev, Dorry L; Massie, Allan B
BACKGROUND:Pretransplant functional, motor, cognitive, and academic deficits are common in pediatric patients requiring heart transplantation (HT); some persist post-HT. We assessed the association between these quality of life (QoL) deficits and post-HT outcomes. METHODS:Using SRTR data 2008-2023, we evaluated the functional, motor, cognitive, and academic status of pediatric HT recipients from listing to 15 years post-HT. We compared all-cause graft survival among patients with vs. without pre-HT deficits using Cox regressions. Among patients with a functioning graft at 1 year, we assessed the association between deficits at that time and subsequent graft failure. RESULTS:, p < 0.001). CONCLUSION/CONCLUSIONS:Pediatric HT recipients with decreased functional status are at higher risk for graft failure and mortality. These patients may benefit from early intervention aimed at improving functional status.
PMID: 39582352
ISSN: 1399-3046
CID: 5779812

Moving With the Times: Updating the National Physical Activity Plan's Media and Communication Strategies to Increase Population-Level Physical Activity

Mailey, Emily L; Olscamp, Kate; Aguiar, Elroy J; Maddock, Jay E; Levan, Macey L; Segar, Michelle
In 2022, an interdisciplinary team of subject matter experts was convened to substantially revise the Mass Media sector content of the National Physical Activity Plan. The updated version recognizes the rapid pace at which the media landscape is evolving and includes a new sector name (Media and Communications) and revised strategies and tactics that reflect progress in the development of a national physical activity campaign brand (Move Your Way ®). This commentary summarizes key changes and highlights the importance of ongoing collaboration between physical activity and media professionals to optimize promotion of physical activity through diverse channels.
PMID: 39571048
ISSN: 2168-6602
CID: 5758792

The Psychosocial Evaluation of Living Kidney Donation: Time for Standardization in Practice

Levan, Macey L; LaPointe Rudow, Dianne
PMID: 38867350
ISSN: 1534-6080
CID: 5669222

ChatGPT Solving Complex Kidney Transplant Cases: A Comparative Study With Human Respondents

Mankowski, Michal A; Jaffe, Ian S; Xu, Jingzhi; Bae, Sunjae; Oermann, Eric K; Aphinyanaphongs, Yindalon; McAdams-DeMarco, Mara A; Lonze, Bonnie E; Orandi, Babak J; Stewart, Darren; Levan, Macey; Massie, Allan; Gentry, Sommer; Segev, Dorry L
INTRODUCTION/BACKGROUND:ChatGPT has shown the ability to answer clinical questions in general medicine but may be constrained by the specialized nature of kidney transplantation. Thus, it is important to explore how ChatGPT can be used in kidney transplantation and how its knowledge compares to human respondents. METHODS:We prompted ChatGPT versions 3.5, 4, and 4 Visual (4 V) with 12 multiple-choice questions related to six kidney transplant cases from 2013 to 2015 American Society of Nephrology (ASN) fellowship program quizzes. We compared the performance of ChatGPT with US nephrology fellowship program directors, nephrology fellows, and the audience of the ASN's annual Kidney Week meeting. RESULTS:Overall, ChatGPT 4 V correctly answered 10 out of 12 questions, showing a performance level comparable to nephrology fellows (group majority correctly answered 9 of 12 questions) and training program directors (11 of 12). This surpassed ChatGPT 4 (7 of 12 correct) and 3.5 (5 of 12). All three ChatGPT versions failed to correctly answer questions where the consensus among human respondents was low. CONCLUSION/CONCLUSIONS:Each iterative version of ChatGPT performed better than the prior version, with version 4 V achieving performance on par with nephrology fellows and training program directors. While it shows promise in understanding and answering kidney transplantation questions, ChatGPT should be seen as a complementary tool to human expertise rather than a replacement.
PMCID:11441623
PMID: 39329220
ISSN: 1399-0012
CID: 5714092