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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
Association of Functional, Academic, Motor, and Cognitive Deficits in Graft Failure in Pediatric Liver Transplantation
Donnelly, Conor; Patel, Suhani S; Jaffe, Ian S; Akizhanov, Daniyar; Chiang, Teresa Po-Yu; Long, Jane J; Liyanage, Luckmini; Griesemer, Adam; Segev, Dorry L; Massie, Allan B
INTRODUCTION/BACKGROUND:Predicting graft failure risk in pediatric liver transplantation (LT) recipients could identify areas for improving management. Persistent cognitive, motor, academic, and functional deficits are common in recipients and their impact on graft survival following LT helps inform risk prediction. METHODS:Using SRTR data 2008-2023, we evaluated the cognitive, motor, academic, and functional deficits of LT recipients at time of transplant to 14 years post-LT. We compared all cause graft failure (ACGF) among patients with versus without pre-LT and 1-year post-LT deficits using Cox regression, adjusting for recipient characteristics. We calculated an individual risk score for ACGF. RESULTS:In 8062 pediatric LT recipients median age 3 (IQR: 1, 10), 28.0%, 29.5%, 35.0%, and 79.8% of recipients had pre-LT deficits in cognition, motor, academic activity, and functional status respectively. This decreased to 23.0%, 18.1%, 14.2%, and 38.7% 1-year post-LT. Increased hazard of ACGF was noted in recipients with pre-LT decreased functional status (aHR = 1.13 (per 10% decrease), 95% CI: 1.10-1.15, p < 0.001), definite motor delay (aHR = 1.60, 95% CI: 1.21-2.10, p < 0.001), and inability to participate in academics (aHR = 1.49, 95% CI: 1.08-1.89, p = 0.01), but not delays in cognition (aHR = 0.91, 95% CI: 0.69-1.21, p = 0.19). Our risk score predicting ACGF demonstrated improved predictive performance compared to clinical parameters alone (C-statistic = 0.70 (0.67, 0.72) vs. 0.66 (0.64, 0.69), p < 0.001). CONCLUSIONS:Pediatric LT recipients with pre- or post-LT motor, academic, and functional deficits are at higher risk for ACGF. Care should be taken to assess deficits to identify patients who may benefit from functional intervention to potentially reduce ACGF risk.
PMID: 40152814
ISSN: 1399-0012
CID: 5817472
Patient and Stakeholder Collaborative Research: Development of a Community Advisory Board for Nephrology and Transplantation Studies
Ghildayal, Nidhi; Scherer, Jennifer; Nalatwad, Akanksha; Mittleman, Ilana; Jones, Jennifer; Keefer, Valen; Nadkarni, Smiti; Palmer, Matthew; Levan, Macey L; Hall, Rasheeda; Segev, Dorry L; McAdams-DeMarco, Mara
Community input enhances the impact of research. Yet, there are challenges when eliciting community perspectives in nephrology/transplant research: recruitment of patients across a wide spectrum of familiarity with kidney disease; a lack of trust from marginalized patients because of health care barriers, institutionalized structural racism, and historical harm; and retention of members facing high burden of care. To address these challenges, we drafted a mission and formed a community advisory board to provide input on nephrology/transplant research. We worked with kidney disease community organizations that prioritize diversity and equity to recruit members with chronic kidney disease, end-stage kidney disease, or a kidney transplant, as well as nephrology/transplant caregivers and kidney donors. We formed a diverse group of 9 members and received feedback on 5 research proposals over 4 quarterly meetings, bridging a communication gap between community perspectives and researchers. The collaborative environment stimulated feedback that improved our nephrology/transplant research to reflect the perspectives of those most affected by research findings. Eight members have remained active for more than 1 year. In this collaborative paper, we describe our process of forming a nephrology/transplant community advisory board, and participants highlight the benefits of sharing their lived experiences to improve and amplify the impact of nephrology/transplant research.
PMCID:12495462
PMID: 41050126
ISSN: 2590-0595
CID: 5951502
Living Kidney Donors' Residential Neighborhoods: Driver or Barrier of Post-Donation Follow-Up?
Li, Yiting; Menon, Gayathri; Kim, Byoungjun; DeMarco, Mario P; Orandi, Babak J; Bae, Sunjae; Wu, Wenbo; Massie, Allan B; Levan, Macey L; Berger, Jonathan C; Segev, Dorry L; McAdams-DeMarco, Mara A
PMID: 40975263
ISSN: 1523-6838
CID: 5935842
Evaluating the representativeness and validity of cosmos as a novel, large-scale, real-world data source for liver transplant research
Strauss, Alexandra T; Terlizzi, Kelly; Orandi, Babak; Stewart, Darren; Massie, Allan B; Vong, Tyrus; Jain, Vedant S; Thompson, Valerie L; McAdams DeMarco, Mara A; Iturrate, Eduardo; Gentry, Sommer E; Segev, Dorry L; Axelrod, David; Mankowski, Michal A; Bae, Sunjae
Liver transplant (LT) recipients experience a wide range of comorbidities, leading to frequent healthcare encounters. Until now, national registries, which have limited exposures and outcomes, and laborious small cohort studies have been the main data sources for LT research. Cosmos database offers electronic health record (EHR)-based insights into LT recipients at the national level with granular data. We evaluated if Cosmos data is representative of the entire US LT recipient population. Using Cosmos (N=20,235) and the national Scientific Registry of Transplant Recipients (SRTR) (N=51,281), we identified adult, first-time LT recipients between 7/2016-12/2022. We compared demographics, clinical data, and mortality across datasets, calculating Kaplan-Meier survival estimates and multi-variable Cox regressions. Recipient characteristics were highly comparable (e.g., female: Cosmos=36.5% vs. SRTR=36.4%, Black: 6.8% vs. 7.2%; BMI: 28.5 kg/m2 [24.8-32.9] vs. 28.2 [24.6-32.4]). Lab values were similar across cohorts, including MELD (24 [17-30] vs. 23 [16-30]). Transplant indications, donor characteristics, and 5-year survival (Cosmos 83.1% [82.3-83.8) vs. SRTR 80.9% [80.4-81.3]) were similar. The associations of clinical factors with survival were similar across both groups. Cosmos database demonstrated acceptable generalizability to the general US LT recipient population, which may advance LT research through a better understanding about LT recipients' experiences and outcomes.
PMID: 40960739
ISSN: 1527-6473
CID: 5935232
Advancing Genetic Risk Assessment in Living Kidney Donation: A Comprehensive Approach to Patient Education and Counseling
Akhtar, Jasmine M; Sidoti, Carolyn N; Diallo, Kadiatou; Downey, Max C; Klitenic, Samantha B; Stewart, Darren E; Vanterpool, Karen B; Schiff, Tamar; Snyder, Jon J; Ali, Nicole M; Massie, Allan B; Segev, Dorry L; Levan, Macey L
PMID: 40960879
ISSN: 1555-905x
CID: 5935242
Cognitive Impairment in CMV Seropositive and CMV Seronegative Deceased Donor Kidney Transplant Recipients
Abidi, Maheen Z; Chen, Xiaomeng; Liu, Yi; Chu, Nadia M; Mathur, Aarti; Weinberg, Adriana; Kaplan, Bruce; Norman, Silas; Hong, Jingyao; Segev, Dorry L; Erlandson, Kristine M; McAdams-DeMarco, Mara A
BACKGROUND/UNASSIGNED:) and long-term premature cognitive aging. We tested whether CMV was associated with post-KT cognitive impairment. METHODS/UNASSIGNED:In a 2-center prospective cohort study of 574 KTRs (mean age: 54.7 y), we obtained CMV donor/recipient (D/R) serostatus and measured pre- and post-KT cognitive function using the Modified Mini-Mental State Examination. We estimated post-KT global cognitive function trajectories by CMV serostatus using adjusted mixed effect models with linear spline terms. RESULTS/UNASSIGNED:(slope = 0.01 points/year; 95% CI, -1.87 to 1.89). CONCLUSIONS/UNASSIGNED:KTRs may be at elevated risk for post-KT cognitive impairment; clinicians may prioritize early interventions in this population.
PMCID:12333801
PMID: 40785852
ISSN: 2373-8731
CID: 5906842
Trends over Time in Practice and Outcomes of Lung Transplantation in Recipients with Human Immunodeficiency Virus
Nauroz, Zeba; Ruck, Jessica M; Shah, Pali; Bush, Errol; Werbel, William; Raju, Sarath; Hemmige, Vagish; Haidar, Ghady; Massie, Allan B; Segev, Dorry L; Durand, Christine M; Bowring, Mary G
BACKGROUND:People with human immunodeficiency virus (HIV) are at an increased risk for end-stage lung disease, for which lung transplantation (LT) may be necessary. METHODS:We aimed to characterize the national practice patterns of LT in recipients with HIV (HIV R+) and post-LT outcomes, including rejection in the US over time. Using the Scientific Registry of Transplant Recipients data (from January 1, 2004, to December 1, 2024, for practice patterns and from January 1, 2016, to December 1, 2024, for outcomes), we compared 96 adult HIV R+ to 42 341 LT recipients without HIV (HIV R-). We examined the association between HIV and outcomes using Gini coefficients, Cox regression, and modified Poisson regression before and after 2020. RESULTS:HIV R+ LTs increased from 0.1% in 2004 to 0.4% of LTs in 2024 (p = 0.07). Pre-2020, 18 centers performed 80% of HIV R+ LTs (Gini = 0.78); post-2020, 14 centers performed 80% of HIV R+ LTs (Gini = 0.76), indicating no expansion of the practice across centers. HIV R+ did not have an increased risk of mortality (adjusted hazard ratio pre-2020: 0.91 [95% confidence interval 0.41-1.62], p = 0.7 and post-2020: 1.05 [0.49-3.25], p = 0.8), or increased risk of 1-year rejection rate (adjusted relative risk pre-2020: 0.60 [0.20-1.77], p = 0.3, and post-2020: 0.77 [0.26-2.2], p = 0.6). CONCLUSIONS:Increasing numbers of HIV R+ LTs and comparable outcomes to those without HIV are encouraging, yet few centers perform these transplants.
PMID: 40778480
ISSN: 1399-3062
CID: 5905422
Cognitive dysfunction, psychiatric distress, and functional decline after liver transplantation
Ruck, Jessica M; Murriel, Emily C; Fortune Hernandez, Nicole; Jefferis, Alexa A; McAdams DeMarco, Mara; Vannorsdall, Tracy D; Segev, Dorry L; King, Elizabeth A; Oh, Esther S
Impaired cognition in liver recipients has been studied in the immediate posttransplant period but is poorly understood in the long term, despite its importance to quality of life. In a single-center cohort of liver recipients transplanted in 2010-2022 and >1 year after transplant, we assessed cognitive performance using a telephone-based battery. We compared depression, anxiety, and self-reported function by cognitive performance using descriptive statistics. Among 120 participants (median age 65, median 7.3 y after transplant), 25% had below-expectation cognition, 53% at-expectation cognition, and 22% above-expectation. Baseline characteristics were similar between groups. Below-expectation performance was most commonly observed in verbal learning (28%) and verbal memory (22%). Overall, 46% had symptoms of depression (38%) and/or anxiety (28%); anxiety was less common among those with above-expectation cognition (0%) versus below-expectation (34%) or at-expectation cognition (38%, p=0.01). The impaired global daily function was reported by 36% of recipients but was not associated with objective cognitive performance. Below-expectation cognition was prevalent among 25% of liver recipients at least 1 year after transplant and was associated with a higher likelihood of reporting psychiatric distress. These findings underscore the need for longitudinal assessment of cognitive and mental health outcomes among recipients of liver transplants.
PMCID:12280359
PMID: 40690315
ISSN: 1527-6473
CID: 5901282
Pre- and Post-Kidney Transplant Abdominal Computed Tomography-Based Muscle Measurements and Post-KT Outcomes
Liu, Yi; Whiteson, Harris Z; Hong, Jingyao; Ghildayal, Nidhi; Shafaat, Omid; Weiss, Clifford R; Pol, Robert A; Mathur, Aarti; Orandi, Babak J; Segev, Dorry L; McAdams-DeMarco, Mara A
INTRODUCTION/BACKGROUND:Early post-kidney transplant (KT) changes likely impact body composition, resulting in adverse post-KT outcomes. We estimated post-KT trajectories of computed tomography (CT)-based muscle quantity/quality and tested whether they were associated with mortality and death-censored graft loss (DCGL) among frail and nonfrail recipients. METHODS:We leveraged a cohort of 294 adult KT recipients (December 2008-February 2020) with CT measurements (muscle quantity: skeletal muscle index; muscle quality: skeletal muscle radiation attenuation). We used mixed linear regression models to estimate 3-year post-KT muscle quantity/quality trajectories. Cox proportional hazard models quantified the association between time-varying pre-/post-KT muscle mass measurements and post-KT mortality and DCGL. RESULTS:) was associated with elevated mortality risk (aHR: 2.00, 95% CI: 1.08-3.70), but not among nonfrail recipients. Among older (≥65 years) recipients, lower muscle quantity was associated with increased DCGL risk (aHR: 2.70, 95% CI: 1.04-7.04), but not among younger recipients. Lower muscle quality (per 10 HU) was associated with elevated mortality (aHR: 2.23, 95% CI: 1.61-3.08) and DCGL (aHR: 1.90, 95% CI: 1.16-3.12) risk. CONCLUSION/CONCLUSIONS:Lower pre-/post-KT muscle quantity/quality were associated with higher risks of post-KT adverse outcomes. Pre-/post-KT rehabilitation to improve muscle quantity/quality may be an effective clinical intervention to minimize risks of adverse post-KT outcomes.
PMID: 40847998
ISSN: 1399-0012
CID: 5909462