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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

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

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

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

The early impacts of an attempt to standardize kidney procurement biopsy practices

Po-Yu Chiang, Teresa; Jaffe, Ian S; Zeiser, Laura B; Lonze, Bonnie E; Segev, Dorry L; Massie, Allan B; Stewart, Darren E
Procurement biopsies are routinely obtained in the United States to evaluate kidneys considered for transplantation, but some argue that they may contribute to kidney nonutilization. Historically, biopsy decisions have been left solely to the discretion of organ procurement organizations (OPOs) and transplant centers. In September 2022, an organ procurement and transplantation network (OPTN) policy designating donors meeting specific clinical criteria as "biopsy-required" went into effect. Using OPTN data from 1 year before and after policy implementation, we used causal inference methods to estimate the policy's impacts on biopsy practices and kidney utilization. The overall biopsy rate remained stable at 62%, rising from 90.6% to 95.8% (P < .001) among biopsy-required kidneys while falling from 49.1% to 43.4% (P < .001) among biopsy-optional kidneys. After adjusting for changing donor characteristics, the policy was associated with a 5% decline in the biopsy rate (adjusted risk ratio = 0.95; P = .007). The overall kidney nonuse rate rose from 27.2% to 28.7%. After accounting for changes in donor characteristics, the policy was not associated with elevated nonuse (adjusted risk ratio = 0.96, P = .06). Although most OPOs are now biopsying nearly all required kidneys, practices still vary widely regarding biopsy-optional kidneys. No correlation was found between OPO-level changes in adjusted biopsy and nonuse rates (ρ = 0.05, P = .70). The OPTN policy has partially standardized biopsy practices without harming kidney utilization.
PMCID:12259276
PMID: 40545004
ISSN: 1600-6143
CID: 5906232

Sleep disorders and sleep medications as risk factors for dementia in kidney transplant recipients: A retrospective cohort study

Chen, Yusi; Long, Jane J; Ghildayal, Nidhi; Li, Yiting; Gao, Chenxi; Chou, Brandon; Cheng, Kevin; Wilson, Malika; DeMarco, Mario P; Ali, Nicole M; Bae, Sunjae; Kim, Byoungjun; Orandi, Babak J; Segev, Dorry L; McAdams-DeMarco, Mara A
Older (aged ≥55 years) kidney transplant (KT) recipients diagnosed with a sleep disorder after transplantation may be at increased risk for developing dementia. Using the United States Renal Data System/Medicare claims (2010-2020), we identified 16 573 older KT recipients with a functioning graft 1-year post-KT. First-time sleep disorders and newly prescribed sleep medications were ascertained within the first year post-KT. We used cause-specific hazard models to estimate the adjusted hazard ratio of diagnosed dementia with inverse probability of treatment weights. Overall, 3615 (21.8%) KT recipients were newly diagnosed with sleep disorders. Recipients diagnosed with a sleep disorder had a 1.32-fold increased risk for dementia (95% CI:1.15-1.51); those with insomnia had a 1.56-fold increased risk (95% CI:1.20-2.03). Of those diagnosed with insomnia, only 7.5% underwent cognitive behavioral therapy for insomnia. Of the recipients, 12.9% with a sleep disorder were prescribed sleep medications. Recipients prescribed sleep medication had a 1.44-fold increased risk for dementia (95% CI:1.16-1.77). Those prescribed zolpidem, the most commonly prescribed medication (80.1%), had a 1.41-fold increased risk (95% CI:1.12-1.78) for dementia; those prescribed other sleep medications had 3.13-fold (95% CI:1.41-6.98) increased risk for dementia. Post-KT sleep disorders are modifiable dementia risk factors; medication-associated dementia risk should be weighed against other therapies such as cognitive behavioral therapy for insomnia during management.
PMCID:12329687
PMID: 40553905
ISSN: 1600-6143
CID: 5906282

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

Consequences of Patient Denial at First Exemption Request for Cardiac Transplantation [Letter]

Alam, A; Golob, S; Patel, S; Fatma, N; Segev, D; Massie, A; Moussa, M; Flattery, E; Phillips, K; Wayda, B; Katz, J N; Stewart, D; Gentry, S; Goldberg, R I; Rao, S; Reyentovich, A; Moazami, N
PMID: 40691956
ISSN: 1557-3117
CID: 5901342

Landscape of US Waitlist Registrants who Received Transplantation Abroad

Terlizzi, Kelly; Jaffe, Ian S; Bisen, Shivani S; Lonze, Bonnie E; Orandi, Babak J; Levan, Macey L; Segev, Dorry L; Massie, Allan B
BACKGROUND:Transplant waitlist registrants in the United States may be delisted because of receipt of a transplant abroad. Although not universally unethical, "travel for transplantation" poses risks to posttransplant care. To better understand this phenomenon, this study identifies temporal trends, geographic patterns, and demographic factors associated with cross-border transplantation. METHODS:Using Scientific Registry of Transplant Recipients data, we identified 818 US waitlist candidates who were removed because of transplantation abroad between 2010 and 2023. We described recipient characteristics overall, by organ, and by top transplant destinations. We used a Cox regression framework to identify characteristics associated with waitlist removal due to transplantation abroad. RESULTS:Transplants abroad averaged 58.4 per year. Incidence peaked at 80 transplants in 2017, with an upward trend after 2021. Kidney transplants made up 92.1% of cases. The most common destinations were the Philippines (19.8%), India (16.5%), Mexico (9.4%), China (8.4%), and Iran (4.4%). India and Mexico experienced the smallest drop-off during the height of the COVID-19 pandemic 2020-2021. Most recipients were US citizens (65.0%) or residents (23.5%). Female (adjusted hazard ratio [aHR], 0.520.610.71; P < 0.001) and Black candidates (aHR, 0.120.180.26; P < 0.001) were less likely to travel abroad compared with Asian candidates (aHR, 5.927.108.52; P < 0.001). Nonresidents (aHR, 6.708.6911.26; P < 0.001) and, among registrations in 2012 or later, nonresidents who traveled to the United States for transplantation (aHR, 27.2738.9155.50; P < 0.001) had a greater chance of undergoing transplantation abroad. CONCLUSIONS:Understanding patterns of international travel for transplantation is key not only for preventing resource drains from destination countries but also for providing adequate posttransplant care for recipients.
PMCID:12262169
PMID: 40653618
ISSN: 1534-6080
CID: 5896832