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Effectiveness of a Mobile Health System on Compliance With 2-Year Living Kidney Donor Follow-Up in the United States
Thomas, Alvin G; Hussain, Sarah; Klitenic, Samantha B; Sidoti, Carolyn N; Waldram, Madeleine M; Chang, Amy; Motter, Jennifer D; Terlizzi, Kelly; Massie, Allan B; Schofield, Mary; Barstow, Karol; Bingaman, Adam; Segev, Dorry L; Levan, Macey L
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.
PMID: 40145946
ISSN: 1399-0012
CID: 5816602
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
Revisiting racial/ethnic disparities in the deceased organ donor referral process
Levan, Macey L; Terlizzi, Kelly; Rigsby, Matilin; Klitenic, Samantha; Hewlett, Jonathan; Adams, Bradley L; Barnes, Jade; Funk, Geoffrey; Segev, Dorry L; Massie, Allan B
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): 0.910.940.97). Black patients provided authorization at a 31% lower rate than White patients (IRR: 0.670.690.71). Slight disparities were observed at procurement (IRR: 0.940.960.99). 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.
PMID: 40254225
ISSN: 1600-6143
CID: 5829802
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
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
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
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