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Regional Disparities in Kidney Transplant Allocation in Brazil: A Retrospective Cohort Study
Salomão Pontes, Daniela Ferreira; Fernandes Ferreira, Gustavo; Segev, Dorry; Massie, Allan B; Levan, Macey; Barbosa, Abner Mácola Pacheco; da Rocha, Naila Camila; Modelli de Andrade, Luis Gustavo
BACKGROUND:Brazil has a large public transplant program, but it remains unclear if the kidney waitlist criteria effectively allocate organs. This study aimed to investigate whether gender, ethnicity, clinical characteristics, and Brazilian regions affect the chance of deceased donor kidney transplant (DDKT). METHODS:We conducted a retrospective cohort study using the National Transplant System/Brazil database, which included all patients on the kidney transplant waitlist from January 2012 to December 2022, followed until May 2023. The primary outcome assessed was the chance of DDKT, measured using subdistribution hazard and cause-specific hazard models (subdistribution hazard ratio [sHR]). RESULTS:We analyzed 118 617 waitlisted patients over a 10-year study period. Male patients had an sHR of 1.07 ([95% CI: 1.05-1.10], p < 0.001), indicating a higher chance of DDTK. Patients of mixed race and Yellow/Indigenous ethnicity had lower rates of receiving a transplant compared to Caucasian patients, with sHR of 0.97 (95% CI: 0.95-1) and 0.89 (95% CI: 0.95-1), respectively. Patients from the South region had the highest chance of DDKT, followed by those from the Midwest and Northeast, compared to patients from the Southeast, with sHR of 2.53 (95% CI: 2.47-2.61), 1.21 (95% CI: 1.16-1.27), and 1.10 (95% CI: 1.07-1.13), respectively. The North region had the lowest chance of DDTK, sHR of 0.29 (95% CI: 0.27-0.31). CONCLUSION/CONCLUSIONS:We found that women and racial minorities faced disadvantages in kidney transplantation. Additionally, we observed regional disparities, with the North region having the lowest chance of DDKT and longer times on dialysis before being waitlisted. In contrast, patients in the South regions had a chance of DDKT and shorter times on dialysis before being waitlisted. It is urgent to implement approaches to enhance transplant capacity in the North region and address race and gender disparities in transplantation.
PMID: 39215436
ISSN: 1399-0012
CID: 5702102
A Delphi Panel Study for Public Education about Vascularized Composite Allograft Donation in the United States
Downey, Max C; Sidoti, Carolyn N; Ferzola, Alexander; Anderson, Naomi; Sung, Hannah C; Van Pilsum Rasmussen, Sarah E; Vanterpool, Karen B; Segev, Dorry L; Cooney, Carisa M; Kimberly, Laura L; Warren, Daniel S; Johnson, Ieesha D; Brandacher, Gerald; Gordon, Elisa J; Levan, Macey L
PMID: 39095046
ISSN: 2164-6708
CID: 5713992
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
Donor Perceptions and Preferences of Telemedicine and In-Person Visits for Living Kidney Donor Evaluation
Kim, Ellie; Sung, Hannah C; Kaplow, Katya; Bendersky, Victoria; Sidoti, Carolyn; Muzaale, Abimereki D; Akhtar, Jasmine; Levan, Macey; Esayed, Suad; Khan, Amir; Mejia, Christina; Al Ammary, Fawaz
INTRODUCTION/UNASSIGNED:Living kidney donor evaluation is a lengthy and complex process requiring in-person visits. Access to transplant centers, travel costs, lost wages, and dependent care arrangements are barriers to willing donors initiating evaluation. Telemedicine can help streamline and epedite the evaluation process. We aimed to deeply understand donor experiences and preferences using hybrid telemedicine video/in-person visits to ease access to donor evaluation or counseling. METHODS/UNASSIGNED:We conducted in-depth, semistructured interviews with donors or donor candidates who completed their evaluation through telemedicine/in-person, or in-person only visits at a tertiary transplant center between November 27, 2019 and March 1, 2021. Enrollment continued until data saturation was reached (interviews with 20 participants) when no new information emerged from additional interviews. Transcripts were analyzed using inductive thematic analysis. RESULTS/UNASSIGNED:Eight themes were identified as follows: (i) reducing financial and logistical burdens (minimizing travel time and travel-related expenses), (ii) enhancing flexibility with scheduling (less time off work and child or family caregiver arrangements), (iii) importance of a walkthrough and establishing shared understanding, (iv) supporting information with technology and visual aids, (v) key role of the coordinator, (vi) preferred visit by provider role (meeting donor surgeon in-person to create rapport and engaging primary care provider in donor evaluation/follow-up), (vii) comparing modality differences in human connection, and (viii) opportunity for family and support network engagement (allowing loved ones to be involved in telemedicine visits irrespective of geographic locations and pandemic restrictions). CONCLUSION/UNASSIGNED:Telemedicine/in-person hybrid model can make donor evaluation more accessible and convenient. Our findings help inform about determinants that influence the adoption of telemedicine to initiate donor evaluation to motivate willing donors. In addition, our results call for policy and legislation that support telemedicine services for living donor kidney transplantation across states.
PMCID:11328557
PMID: 39156145
ISSN: 2468-0249
CID: 5680372
A Clarified Interpretation of Permanence Justifies Death Determination in NRP Protocols
Parent, Brendan; Thiessen, Carrie; Wall, Anji; Levan, Macey; Gordon, Elisa J
PMID: 38829585
ISSN: 1536-0075
CID: 5665002
National Attitudes Toward Living Kidney Donation in the United States: Results of a Public Opinion Survey
Kaplow, Katya; Ruck, Jessica M; Levan, Macey L; Thomas, Alvin G; Stewart, Darren; Massie, Allan B; Sung, Hannah C; Pisano, Sarah F; Sidoti, Carolyn; Segev, Dorry L; Sinacore, Joseph; Waterman, Amy D
RATIONALE & OBJECTIVE/UNASSIGNED:Understanding national attitudes about living kidney donation will enable us to identify and address existing disincentives to living kidney donation. We performed a national survey to describe living kidney donation perceptions, perceived factors that affect the willingness to donate, and analyzed differences by demographic subgroups. STUDY DESIGN/UNASSIGNED:The survey items captured living kidney donation awareness, living kidney donation knowledge, willingness to donate, and barriers and facilitators to living kidney donation. SETTING & POPULATION/UNASSIGNED:We surveyed 802 US adults (aged 25-65 years) in June 2021, randomly selected from an online platform with diverse representation. ANALYTICAL APPROACH/UNASSIGNED:and Fisher exact tests. We inductively evaluated free-text responses to identify additional barriers and facilitators to living kidney donation. RESULTS/UNASSIGNED:Most (86.6%) of the respondents reported that they might or would definitely consider donating a kidney while they were still living. Barriers to living kidney donation included concerns about the risk of the surgery, paying for medical expenses, and potential health effects. Facilitators to living kidney donation included having information on the donation surgery's safety, knowing that the donor would not have to pay for medical expenses related to the donation, and hearing living kidney donation success stories. Awareness of the ability to participate in kidney-paired donation was associated with a higher willingness to donate. LIMITATIONS/UNASSIGNED:Potential for selection bias resulting from the use of survey panels and varied incentive amounts, and measurement error related to respondents' attention level. CONCLUSIONS/UNASSIGNED:Most people would consider becoming a living kidney donor. Increased rates of living kidney donation may be possible with investment in culturally competent educational interventions that address risks associated with donating, policies that reduce financial disincentives, and communication campaigns that raise awareness of kidney-paired donation and living kidney donation.
PMCID:10906424
PMID: 38435064
ISSN: 2590-0595
CID: 5723042
Patient Perspectives on Solid Organ Transplantation From Donors With Hepatitis C Viremia to Recipients Without Hepatitis C Viremia
Vanterpool, Karen B; Diallo, Kadiatou; Kim, Ellie; Van Pilsum Rasmussen, Sarah E; Johnson, Morgan A; Predmore, Zachary; Brundage, Janetta; Barnaba, Brittany; Desai, Niraj; Levan, Macey L; Sung, Hannah C; Kates, Olivia; Sugarman, Jeremy; Durand, Christine M
BACKGROUND/UNASSIGNED:Organ transplantation from donors with hepatitis C viremia (HCV) to recipients without HCV (HCV D+/R-) has excellent medical outcomes. Less is known about the psychosocial impact and experiences of HCV D+/R- recipients, particularly outside of clinical trials. METHODS/UNASSIGNED:We conducted in-depth, semistructured interviews with 24 HCV D+/R- recipients (kidney, n = 8; lung, n = 7; liver, n = 5; heart, n = 3; simultaneous heart and kidney, n = 1) who received transplants outside of clinical trials and were treated for HCV after transplant to assess their experiences and perspectives. We used thematic analysis to analyze the interviews. RESULTS/UNASSIGNED:Interviewees' reasons for accepting an HCV D + organ were based on perceived benefits and confidence in the effectiveness of HCV treatment. The majority (62%) received HCV treatment within 1 month after transplant (range, 1 day-2 months). Most interviewees reported positive transplant outcomes, including reduced wait times and improved survival, health, physical activity, and quality of life. Overall, themes and experiences did not differ significantly between different organ transplant types. Generally, interviewees did not perceive stigma from those aware of the HCV D+ transplant; yet, disclosure was selective and a few recipients reported concerns from family members about posttransplant HCV transmission risk. Other common concerns included treatment costs and delays, which were not always anticipated by recipients. CONCLUSIONS/UNASSIGNED:Our findings suggest that HCV D+/R- kidney, liver, and heart and lung transplant recipients outside of clinical trials had overall positive experiences. However, HCV transmission risk, treatments costs, and treatment delays were a source of concern that might be mitigated with targeted pretransplant education.
PMCID:10906703
PMID: 38434612
ISSN: 2328-8957
CID: 5723022
Data professionals' attitudes on data privacy, sharing, and consent in healthcare and research
Kaplow, Katya; Downey, Max; Stewart, Darren; Massie, Allan B; Motter, Jennifer D; Taylor, Lauren; Massarelli, John; Matalon, Taylor; Sidoti, Carolyn; Levan, Macey L; Parent, Brendan
OBJECTIVE/UNASSIGNED:Individuals who work on health data systems and services are uniquely positioned to understand the risks of health data collection and use. We designed and conducted a survey assessing the perceptions of those who work with health data around health data consent, sharing, and privacy practices in healthcare and clinical research. METHODS/UNASSIGNED:tests and ordinal logistic regression. RESULTS/UNASSIGNED:Most of our respondents (61.7%) reported that they would trust people to use their health data across various sectors, but more respondents trusted those working in academic medical research (86.5%) and healthcare offices (89.9%) compared to those working in industry (68.2%). Despite this reported trust, a strong majority believed that individuals should have complete control over their health data (97.3%), specific consent should be obtained for each use of their health data (92.0%), and that there should be higher standards of consent and privacy for health records data than other types of data (93.7%). CONCLUSIONS/UNASSIGNED:Based on our findings, we might infer that people who work with health data generally trust institutions across sectors to protect their health data. However, many would prefer to have complete control over who has access to their health data and how it is used. These insights should be explored further through qualitative studies.
PMCID:11504247
PMID: 39465223
ISSN: 2055-2076
CID: 5746712
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
PMCID:10615888
PMID: 37309031
ISSN: 1534-6080
CID: 5613922
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
PMCID:10539011
PMID: 37749818
ISSN: 1534-6080
CID: 5609542