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"You Gotta Keep Climbing That Mountain to Reach the Goal": Perspectives of Transplant Waitlisted Dialysis Patients. A Qualitative Study
Wilson, Deborah H; Hughes, Avrey; Curriero, Samantha; Szanton, Sarah; Crews, Deidra C; McAdams-DeMarco, Mara; Brennan, Daniel C; Hladek, Melissa deCardi
RATIONALE & OBJECTIVE/UNASSIGNED:There is a critical need for interventions that help improve outcomes for individuals requiring a kidney transplant but are waitlisted as inactive. We explored the perspectives of dialysis patients and clinicians to develop community aging in place-advancing better living for elders (CAPABLE)-transplant. CAPABLE utilizes a home-visiting registered nurse, occupational therapist, and handy worker who work with older adults to create action plans that change behaviors to improve safety, independence, and health. STUDY DESIGN/UNASSIGNED:Qualitative semi-structured interviews. SETTING & PARTICIPANTS/UNASSIGNED:Individuals treated with dialysis and inactive on the transplant list (n = 20) and transplant clinicians (n = 6) from an urban transplant center. OUTCOMES/UNASSIGNED:The adaptation of CAPABLE into CAPABLE-transplant. ANALYTICAL APPROACH/UNASSIGNED:Following Braun and Clark's method of thematic analysis to inform intervention adaptation. RESULTS/UNASSIGNED:Three major themes were identified: (1) mismatch of expectations with subthemes: communication keeps breaking down; high volume at center impedes follow-up; (2) agency: from fragmentation to functionality with subthemes: patient agency needs enhancing; digital literacy is key to improving communication capacity; preposttransplant education needs to be ongoing; (3) "You gotta keep climbing that mountain 'till you reach the goal" with a subtheme of navigating compliance while struggling with symptom burden. LIMITATIONS/UNASSIGNED:A single-center perspective and small sample size. CONCLUSIONS/UNASSIGNED:By comparing the patient and clinician experience, specific adaptations for CAPABLE-transplant that address modifiable factors to decrease time inactive on the kidney transplant waitlist were identified. These included adding a digital literacy component to the home-visiting team to improve patient-clinician communication, ongoing education about the transplant process to improve health literacy, and activities to strengthen mental fortitude, self-efficacy, and agency. The core components of CAPABLE remain important to improve physical function, medication management, pain, and depressive symptoms. Patients and clinicians expressed support for CAPABLE-transplant to help improve self-efficacy, agency, and engagement along the transplant continuum.
PMCID:12835421
PMID: 41608296
ISSN: 2590-0595
CID: 6003622
A Digital Health Framework to Assess Glycemia and Physical Activity in Kidney Transplant Candidates: A Pilot Study
Flaherty, Carina M; Sanchez, Christopher; Liu, Celina; Upadhyay, Dhairya; Segev, Dorry L; Ali, Nicole; Lee, Joseph; McAdams-DeMarco, Mara; Grams, Morgan E; Barua, Souptik
BACKGROUND/UNASSIGNED:Kidney transplant recipients are at risk for adverse health outcomes. Digital health tools such as wearable accelerometers and continuous glucose monitors (CGMs) can provide detailed, noninvasive tracking of health behaviors and measures, such as physical activity, sleep, and glucose levels, that may offer insights into future health concerns, such as posttransplant diabetes mellitus, cognitive health, and transplant rejection. However, there is limited evidence on the feasibility and acceptability of these devices in kidney transplant candidates older than 50 y. METHODS/UNASSIGNED:This observational cross-sectional pilot study aimed to examine the feasibility of 2 digital health tools: an accelerometer and a continuous glucose monitor. Participants were eligible for the study if they were living donor kidney transplant candidates, aged 50 y or older, had no known cognitive impairments, and could provide informed consent. Participants were asked to wear a CGM and an accelerometer for up to 14 d before their kidney transplant surgery. Device feasibility was quantified by (1) the total time the devices were worn, and (2) the validated System Usability Scale survey administered after the devices were returned. RESULTS/UNASSIGNED:20 participants enrolled in the study (mean age 64 ± 9 y, 25% women, 40% with type 2 diabetes). The median number of days of accelerometer and CGM wear were 7 (interquartile range, 6-10) d and 7 (interquartile range, 7-10) d, respectively. Ninety percent of participants reported a favorable opinion of both devices. Participants wore the CGM 100% of the time and the accelerometer 90% of the time, indicating high adherence. CONCLUSIONS/UNASSIGNED:The use of digital devices was acceptable among kidney transplant candidates aged older than 50 y, paving the way for larger studies to identify early digital biomarkers of health outcomes in this high-risk population.
PMCID:12818855
PMID: 41567755
ISSN: 2373-8731
CID: 5988542
Frailty in Focus - A Scoping Review of Frailty Instruments on from the Kidney Disease Aging Research Collaborative
Nair, Devika; Mittleman, Ilana; Magro, Juliana; Catanese, Benjamin; Hannan, Mary F; Hladek, Melissa D; Hong, Jingyao; Huang, Nan-Su; Taylor, Matthew H; Tennankore, Karthik K; Wolfgram, Dawn F; Hall, Rasheeda K; McAdams-DeMarco, Mara; ,
BACKGROUND:Frailty is a multi-system syndrome of decreased physiologic reserve with high prevalence, early incidence, and prognostic significance in kidney disease. Apart from the Physical Frailty Phenotype (PFP), less is known regarding psychometric properties of other instruments. We critically appraise the validity and reliability of frailty instruments across the kidney disease continuum, acknowledge limitations, and highlight knowledge gaps. METHODS:Following PRISMA-ScR guidelines, we searched PubMed, EMBASE, Cochrane, CINAHL, Web of Science, ClinicalTrials.gov, and PsycInfo from website inception through 9/2024. Eligible studies applied a validated frailty instrument apart from the PFP to a kidney disease population. RESULTS:We identified 136 articles after screening 4,048 initial results. The most commonly cited instruments were the Clinical Frailty Scale (CFS; N=56), FRAIL Scale (N=30), and Edmonton Frail Scale (N=16). Most studies included adults receiving hemodialysis (N=85) and with chronic kidney disease (N=39). Median age ranges were 53-83 years. Most frailty instruments demonstrated predictive validity for mortality and hospitalizations. Concurrent validity was most frequently demonstrated between frailty and older age, female sex, greater comorbidities, and lower albumin. Seven studies reported reliability. While some instruments were feasible (CFS, FRAIL scale), their measurement could result in higher frailty prevalence compared to the PFP. Existing instruments do not capture the full spectrum of psychosocial and physiologic domains of frailty. CONCLUSIONS:The CFS demonstrates the strongest validity, apart from the PFP, although its use may result in higher measured frailty prevalence. Further research should test the feasibility of screening for frailty in clinical practice; the psychometric properties (i.e., responsiveness) of frailty instruments in younger adults, those with acute kidney injury, kidney transplant recipients, and those receiving conservative kidney management; and whether adding psychosocial and/or physiological markers improves frailty measurement validity. Addressing these gaps will facilitate wider frailty measurement in kidney disease research and aid adoption into practice.
PMID: 41563838
ISSN: 1555-905x
CID: 5988392
Neighborhood Ambient Air Pollution and Post-Transplant Outcomes in Older Kidney Transplant Recipients
Menon, Gayathri; Wilson, Malika; Li, Yiting; Kim, Byoungjun; Gordon, Terry; Thurston, George D; Crews, Deidra C; Purnell, Tanjala S; Thorpe, Roland J; Szanton, Sarah L; Segev, Dorry L; McAdams-DeMarco, Mara A
INTRODUCTION/BACKGROUND:Elevated concentrations of air pollutants in residential neighborhoods are associated with poorer survival, cognitive, and cardiovascular health among older adults. Older kidney transplant (KT) recipients may be more vulnerable due to chronic immunosuppression and age-related co-morbidities. Therefore, we quantified the associations between pollutant concentrations and post-KT outcomes among older recipients. METHODS:]) were obtained from the Center for Air, Climate and Energy Solutions, and matched by ZIP code and year of KT. We used shared frailty models (cluster = state) to estimate the adjusted hazard ratios (aHR) of mortality and death-censored graft failure (DCGF) and competing risk models with cluster-robust standard errors to estimate the adjusted subhazard ratios (aSHR) of dementia and stroke by pollutant concentrations. RESULTS:concentrations were associated with a 3% (aSHR = 1.03, 95% CI: 1.00-1.07) and 4% higher risk of stroke (aSHR = 1.04, 95% CI: 1.02-1.07), respectively. CONCLUSION/CONCLUSIONS:Residence in neighborhoods with high concentrations of ambient air pollutants can worsen patient and graft survival, as well as increase the risk of stroke among older KT recipients. Early screening and interventions targeting older recipients living in such neighborhoods may be crucial for preserving cognitive and cerebrovascular health, as well as improving longitudinal quality of life.
PMCID:12782280
PMID: 41499695
ISSN: 1532-5415
CID: 5981002
Association of Myosteatosis and of Graft Loss after Kidney Transplantation: An International Observational Study
Zorgdrager, Marcel; Liu, Yi; Hong, Jingyao; Ghildayal, Nidhi; Swaab, Tim D A; Bakker, Stephan J L; Viddeleer, Alain R; Orandi, Babak J; Shafaat, Omid; Weiss, Clifford R; Segev, Dorry; McAdams-DeMarco, Mara; Pol, Robert A
BACKGROUND:Sarcopenia and myosteatosis are indicators of abnormal body composition (BC). Computed tomography (CT) imaging has proven to be an accurate modality for BC quantification in kidney transplantation (KT). We tested whether pre-KT CT-based BC was associated with both all-cause graft loss (ACGL) and mortality among adult recipients from two centers (Johns Hopkins Hospital [JHH] and University Medical Center Groningen [UMCG]). METHODS:Patients who underwent a KT between 2003 and 2020 were followed for a median (interquartile range) follow-up of 6.4 (4.6-8.5) years at JHH and 6.3 (5.1-7.5) years at UMCG. Cox proportional hazard models were used to estimate the associations of BC with ACGL/ mortality. Fine and Gray regression analysis was performed to assess the association between BC and death-censored graft loss. Prior to KT, 49% of recipients had sarcopenia and 66% had myosteatosis. RESULTS:In total 608 patients were included from JHH (N= 294) and UMCG (N=314). Sarcopenia was not associated with post-KT outcomes. Myosteatosis was associated with a higher risk of ACGL (adjusted hazard ratio 1.78, 95%CI:1.08 - 2.93) and mortality (adjusted hazard ratio 2.35, 95%CI: 1.27 - 4.33) at JHH, but showed no significant association at UMCG after adjusting for confounders. Myosteatosis did not show a significant association with death-censored graft loss at both centers. CONCLUSION/CONCLUSIONS:Myosteatosis ascertained from existing CT scans could help identify recipients at higher risk for ACGL who may benefit most from prehabilitation.
PMID: 41091560
ISSN: 1555-905x
CID: 5954812
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
Neighborhood Factors, Air Pollution, and Mortality Among Kidney Failure Patients: Exploring Differences by Race and Ethnicity
Li, Yiting; Menon, Gayathri; Long, Jane J; Wilson, Malika; Kim, Byoungjun; DeMarco, Mario P; Orandi, Babak J; Bae, Sunjae; Wu, Wenbo; Feng, Yijing; Gordon, Terry; Thurston, George D; Segev, Dorry L; McAdams-DeMarco, Mara A
RATIONALE & OBJECTIVE/UNASSIGNED:exposure and mortality, overall and by race and ethnicity. STUDY DESIGN/UNASSIGNED:Cohort study (2003-2019). SETTING & PARTICIPANTS/UNASSIGNED:National registry for patients with kidney failure. EXPOSURES/UNASSIGNED:), segregation scores (Theil's H method), deprivation scores (American Community Survey), and built environment factors (medically underserved areas [MUA] and urbanicity) by patients' residential ZIP code at dialysis initiation. OUTCOME/UNASSIGNED:All-cause mortality. ANALYTICAL APPROACH/UNASSIGNED:and mortality, overall and stratified by race and ethnicity. RESULTS/UNASSIGNED:< 0.001]). LIMITATIONS/UNASSIGNED:may not reflect individual-level exposures. CONCLUSIONS/UNASSIGNED:and reduce related mortality.
PMCID:12768917
PMID: 41503187
ISSN: 2590-0595
CID: 5981112
COVID-19 Pandemic-induced Healthcare Disruption and Chronic Kidney Disease Progression
Liu, Richard; Abraham, Rahul; Conderino, Sarah E; Kanchi, Rania; Blecker, Saul B; Dodson, John A; Thorpe, Lorna E; Charytan, David M; McAdams-DeMarco, Mara A; Wu, Wenbo
INTRODUCTION/BACKGROUND:The coronavirus disease 2019 (COVID-19) pandemic caused unprecedented disruptions to healthcare systems worldwide, significantly affecting patients with chronic kidney disease (CKD). In this study, we evaluated the impact of the pandemic on healthcare-seeking behavior and CKD progression among patients in New York City. METHODS:Using electronic health records from PCORnet's INSIGHT Clinical Research Network, we conducted a retrospective cohort study focused on 84,062 patients with CKD aged 50 years or older with multiple chronic conditions seen between 2017 and 2022. Patients were identified using pre-pandemic CKD diagnostic codes, and confirmed by estimated glomerular filtration rate (eGFR) measurements. Care disruption was defined as receiving fewer visits than recommended by Kidney Disease: Improving Global Outcomes (KDIGO) guidelines. We used linear mixed-effects models to estimate annual eGFR changes and analyze trends in care visits stratified by CKD stage and care disruption. RESULTS:. Care visits declined sharply in 2020 across patients at all but the end stage, with incomplete recovery by 2022. Patients with adequate pre-pandemic care maintained their visits above KDIGO levels, while those with inadequate care increased visits during the pandemic. Pronounced eGFR decline occurred in 2020 (10.6%), with slower declines observed thereafter. CONCLUSION/CONCLUSIONS:The COVID-19 pandemic disrupted CKD care, potentially leading to reduced healthcare-seeking behavior and accelerated kidney function decline in 2020. Slower decline post-2020 may reflect improved healthcare utilization, better medication adherence, and new therapies, and other factors.
PMCID:12855697
PMID: 40906008
ISSN: 1525-1497
CID: 6002802
Intradialytic Cognitive and Aerobic Exercise Training to Preserve Cognitive Function: IMPCT, a Multi-Dialysis Center 2 × 2 Factorial Block-Randomized Controlled Trial
Ghildayal, Nidhi; Liu, Yi; Hong, Jingyao; Li, Yiting; Chen, Xiaomeng; Fernández, Marlís González; Carlson, Michelle C; Fine, Derek M; Appel, Lawrence J; Diener-West, Marie; Charytan, David M; Mathur, Aarti; Segev, Dorry L; McAdams-DeMarco, Mara
UNLABELLED:<p>Introduction: Patients with end-stage kidney disease develop cognitive impairment due to comorbidities and dialysis dependence. Among community-dwelling older adults, cognitive (CT) and exercise training (ET) are promising interventions to preserve cognition; these interventions may be tailored for adults undergoing in-center hemodialysis. METHODS:Adult (≥18 years) English-speaking patients undergoing hemodialysis (within 3 months to 3 years of initiation) were enrolled in a 2 × 2 factorial randomized controlled trial: Interventions Made to Preserve Cognitive Function Trial (IMPCT). Participants (n = 121) were block-randomized (September, 2018-February, 2023) into 4 arms: control (SC) (n = 26), intradialytic web-based CT (n = 31), ET using foot peddler (n = 29), and combined CT+ET (n = 35). Participants underwent assessments at baseline and 3 months for executive function, global cognitive function, clinical outcomes, and patient-centered outcomes. We estimated 3-month executive function change (primary outcome) and secondary outcomes using linear regression. RESULTS:There were no differences in 3-month executive function change by arm. Participants exhibited improvement in 3-month global cognitive function in CT+ET arm (Montreal Cognitive Assessment score difference = 2.1, 95% CI: 0.4-3.9), and self-reported 3-month improvement in perceived health change (score difference = 0.8, 95% CI: 0.2-1.4) in ET arm. CONCLUSION/CONCLUSIONS:Clinicians may encourage CT+ET for hemodialysis patients to improve short-term global cognitive function and perceived health. The long-term benefits of these interventions warrant further study. </p>.
PMCID:12173432
PMID: 40349685
ISSN: 1421-9670
CID: 6001412
Residential Neighborhood Disadvantage and Access to Kidney Transplantation
Li, Yiting; Menon, Gayathri; Kim, Byoungjun; Bae, Sunjae; Orandi, Babak J; DeMarco, Mario P; Wu, Wenbo; Crews, Deidra C; Purnell, Tanjala S; Thorpe, Roland J; Szanton, Sarah L; Segev, Dorry L; McAdams-DeMarco, Mara A
IMPORTANCE/UNASSIGNED:Residence in a disadvantaged neighborhood is a key driver of racial and ethnic disparities in the diagnosis and management of chronic diseases; however, its impact on disparities in access to waitlisting and kidney transplantation (KT) is unclear. OBJECTIVE/UNASSIGNED:To examine the association between neighborhood disadvantage and access to waitlisting and KT. DESIGN, SETTING, AND PARTICIPANTS/UNASSIGNED:This retrospective cohort study (January 1, 2015, to December 31, 2021) used a US national registry to assess adults (aged ≥18 years) with end-stage kidney disease (ESKD) and adult KT candidates. Statistical analysis was performed in March 2025. EXPOSURE/UNASSIGNED:Residential neighborhood disadvantage score (built environment disadvantage, criminal injustice, education disadvantage, unemployment, housing instability, poverty, social fragmentation, transportation barrier, and wealth inequality) ascertained by American Community Survey and other public data sources. MAIN OUTCOMES AND MEASURES/UNASSIGNED:The adjusted hazard ratios (AHRs) of waitlisting and KT (any KT, live-donor KT [LDKT], and preemptive KT) were assessed across tertiles of the neighborhood disadvantage score using cause-specific hazard models. Interaction terms were used to quantify these aforementioned associations by race and ethnicity. RESULTS/UNASSIGNED:The study included 501 444 adults with ESKD initiating dialysis (mean [SD] age, 63.9 [14.6] years; 293 937 [58.6%] male; 25 790 [5.1%] Asian [Asian American, Native Hawaiian, and Pacific Islander], 133 923 [26.7%] Black, 66 323 [13.2%] Hispanic, and 275 408 [54.9%] White) and 95 068 KT candidates on the waitlist (mean [SD] age, 53.7 [13.0] years; 60 328 [63.5%] male; 6956 [7.3%] Asian, 25 215 [26.5%] Black, 15 685 [16.5%] Hispanic, and 47 212 [49.7%] White). A total of 173 880 adults with ESKD (34.7%) and 26 718 KT candidates (28.1%) resided in high-disadvantage neighborhoods. After adjustment, adults residing in high-disadvantage neighborhoods were less likely to be waitlisted (AHR, 0.71; 95% CI, 0.69-0.72) compared with those in low-disadvantage neighborhoods. Specifically, Asian (AHR, 0.87; 95% CI, 0.80-0.95), Black (AHR, 0.68; 95% CI, 0.66-0.70), Hispanic (AHR, 0.89; 95% CI, 0.86-0.92), and White (AHR, 0.68; 95% CI, 0.66-0.71) adults in high-disadvantage neighborhoods were less likely to be waitlisted compared with White adults in low-disadvantage neighborhoods. Overall, candidates residing in high-disadvantage neighborhoods were less likely to receive any KT (AHR, 0.89; 95% CI, 0.87-0.92), LDKT (AHR, 0.65; 95% CI, 0.62-0.69), and preemptive KT (AHR, 0.62; 95% CI, 0.58-0.67). Notably, Black candidates residing in high-disadvantage neighborhoods were less likely to receive KT (AHR, 0.60; 95% CI, 0.58-0.62), LDKT (AHR, 0.23; 95% CI, 0.21-0.25), and preemptive KT (AHR, 0.22; 95% CI, 0.20-0.25) compared with White candidates in low-disadvantage neighborhoods. CONCLUSIONS AND RELEVANCE/UNASSIGNED:In this cohort study of adults with ESKD and KT candidates, residence in high-disadvantage neighborhoods was associated with reduced access to waitlisting and KT; it also was associated with persistent racial and ethnic disparities in LDKT and preemptive KT. These results suggest that to support equitable access, clinicians and transplant programs should work with social workers and community advocates to implement initiatives (eg, outreach and financial support) that address structural barriers and direct resources to affected neighborhoods.
PMID: 41468017
ISSN: 2574-3805
CID: 5987022