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Trends in Patient Portal Messages, Office Visits, and Telephone Encounters
Long, Jane J; McAdams-DeMarco, Mara A; Schwartz, Mark D; Chodosh, Joshua; Oermann, Eric K; Segev, Dorry L; Mankowski, Michal A
PMID: 42329625
ISSN: 1538-3598
CID: 6055282
Evaluating Barriers to Kidney Transplantation in the United States
Donnelly, Conor B; Patel, Suhani S; Husain, Syed Ali; Gentry, Sommer E; Patzer, Rachel E; Lonze, Bonnie E; Bae, Sunjae; Axelrod, David; Orandi, Babak J; McAdams-DeMarco, Mara A; Segev, Dorry L; Massie, Allan B; Mankowski, Michal A
KEY POINTS/CONCLUSIONS:In this cohort study of 720,348 adults referred for kidney transplantation from 2014 to 2025, only 48% were evaluated and 19% were waitlisted. Progression from referral to evaluation, waitlisting and kidney transplantation was limited by individual, center-level, and geographic factors. Some centers evaluated and waitlisted patients at rates far below the national average, and low-volume centers had lower rates of transplantation. BACKGROUND:Kidney transplantation is a cost-effective, lifesaving treatment of kidney failure, compared with dialysis. Unfortunately, most patients with kidney failure never undergo transplantation. METHODS:Using Epic Cosmos electronic health record data on all patients referred for kidney transplantation from 2014 to 2025, we assessed the stage-specific progression and attrition in the process of evaluation, waitlisting, and kidney transplantation. Center-level and individual (socioeconomic, geographic, and insurance status) factors associated with access to evaluation, waitlisting, and kidney transplantation were characterized using modified Poisson regression. RESULTS:Among 720,348 referred candidates, the median age was 55 years (interquartile range [IQR], 42-64); 47% of patients were White, 52% were male, and 87% were English speaking. Eighty-five percent of patients lived in urban areas. Of the referred candidates, 48% initiated evaluation, 19% were waitlisted, and 10% ultimately underwent transplantation. Among the referred patients who initiated evaluation, the median (IQR) time to evaluation initiation was two (1-4) months after referral; among the patients who were waitlisted, the median (IQR) time to waitlisting was four (2-9) months after evaluation initiation. Patients who were never married (0.94; 95% confidence interval [CI], 0.93 to 0.94), had severe obesity (0.70; 95% CI, 0.69 to 0.72), or were from rural zip codes (relative risk, 0.98; 95% CI, 0.97 to 1.00) were less likely to initiate evaluation. Low-volume centers had lower relative rates of transplantation (0.92; 95% CI, 0.88 to 0.96). In centers with documentation for nonprogression to evaluation, reasons for removal included not meeting criteria/not a candidate (18%), patient decision (13%), unable to contact (12%), death (4%), and financial/insurance complications (7%). CONCLUSIONS:Our study shows substantial attrition before kidney transplant waitlisting.
PMID: 42322663
ISSN: 1533-3450
CID: 6055102
Changes in Depressive Symptoms Pre- and Post-Kidney Transplantation
Huang, Nan-Su; Hong, Jingyao; Li, Yiting; Ghildayal, Nidhi; Ali, Nicole M; Crews, Deidra C; Cukor, Daniel; Mathur, Aarti; Orandi, Babak J; Norman, Silas P; Segev, Dorry L; McAdams-DeMarco, Mara A
BACKGROUND:Depressive symptoms are common in end-stage kidney disease (ESKD) patients, and may persist after stopping dialysis due to challenges post-KT despite clinical benefits. We sought to assess changes in depressive symptoms pre- and post-KT. METHODS:We leveraged a multi-center prospective cohort of 4,661 adult (aged ≥18) potential KT candidates and 1,215 recipients (2008-2025). Participants reported depressive symptoms via the Center for Epidemiologic Studies Depression (CES-D) scale (range 0-60, high depressive symptoms≥16) at evaluation, KT, and post-KT. We used linear mixed-effect models to estimate post-KT trajectories of CES-D scores overall and by characteristics at KT admission. RESULTS:19% of potential candidates at evaluation and 15% of recipients at admission had depressive symptoms; 46% and 38%, respectively, were non-Hispanic Black. Over the first 4 years post-KT, depressive symptoms slightly worsened (slope=0.4 points/year, 95% confidence interval [CI]:0.3, 0.6) but remained below the threshold for clinical depression. Post-KT CES-D score change differed by pre-KT high depressive symptoms score (difference=-1.2 points/year, 95%CI:-1.8, -0.6). Specifically, post-KT depressive symptoms were 0.7 points/year lower (95%CI:-1.2, -0.1) among recipients with pre-KT high depressive symptoms and 0.5 points/year higher (95%CI:0.3, 0.7) among those without. CES-D score change also differed by preemptive KT status (difference=-0.6 points/year, 95%CI:-1.0, -0.1, non-preemptive versus preemptive). CONCLUSIONS:Depressive symptoms worsened slightly over the first 4 years post-KT but remained below the threshold for clinical depression. Notably, post-KT CES-D scores decreased in recipients with high pre-KT depressive symptoms. Clinicians should discuss the mental health impact of KT with patients and tailor care decisions to individual needs.
PMID: 42340755
ISSN: 2641-7650
CID: 6055862
Residential and Transplant Center Neighborhood Segregation and Live Donor Liver Transplant
Strauss, Alexandra T; Menon, Gayathri; Li, Yiting; Thompson, Valerie L; Jain, Vedant; Long, Jane J; Kim, Byoungjun; DeMarco, Mario P; Orandi, Babak J; Segev, Dorry L; McAdams-DeMarco, Mara A
IMPORTANCE/UNASSIGNED:Neighborhood segregation, a mechanism of structural racism, is associated with racial and ethnic disparities in health care access and outcomes. Live donor liver transplant (LDLT) is the ideal treatment for cirrhosis, improving survival and quality of life. Understanding the role of segregation in LDLT access is important to address disparities. OBJECTIVE/UNASSIGNED:To assess the associations between residential and transplant center neighborhood segregation and LDLT access. DESIGN, SETTING, AND PARTICIPANTS/UNASSIGNED:This cohort study used data from a US national transplant registry on adult candidates (age ≥18 years) for first-time liver transplant between February 1, 2016, and June 30, 2025, at centers that performed 1 or more LDLT annually during that time. EXPOSURE/UNASSIGNED:Residential and transplant center neighborhood segregation, measured using the Thiel H method at the zip code tabulation area level and dichotomized at the respective median values. MAIN OUTCOMES AND MEASURES/UNASSIGNED:A Cox proportional hazards regression model quantified the adjusted hazard ratio (AHR) of LDLT and included interactions with race and ethnicity and insurance. LDLT access within high-segregation residential neighborhoods by racial and ethnic composition (predominantly White or predominantly racial and ethnic minoritized population) was also quantified. RESULTS/UNASSIGNED:Among 22 223 adult liver transplant candidates, mean (SD) age was 55.3 (11.2) years, 13 518 (60.8%) were male, 1476 (6.6%) were Black, 5097 (22.9%) were Hispanic or Latino, and 15 650 (70.4%) were White. Most (11 669 [52.5%]) had private insurance. After adjustment, candidates residing in high-segregation neighborhoods had lower likelihood of LDLT access (AHR, 0.81; 95% CI, 0.74-0.88). Hispanic or Latino candidates in high-segregation neighborhoods had lower likelihood of LDLT access than their counterparts in low-segregation neighborhoods (AHR, 0.59; 95% CI, 0.49-0.72; P < .001 for interaction), but associations between neighborhood segregation and LDLT did not vary significantly by insurance type (P = .52 for interaction). Candidates wait-listed at transplant centers in high-segregation neighborhoods had lower likelihood of LDLT access (AHR, 0.64; 95% CI, 0.59-0.70). Candidates with Medicare or Medicaid wait-listed at centers in high-segregation neighborhoods had lower likelihood of LDLT access than their counterparts in low-segregation neighborhoods (AHR, 0.53; 95% CI, 0.45-0.51; P < .001 for interaction). Within high-segregation residential neighborhoods, candidates in neighborhoods with a larger racial and ethnic population had lower likelihood of LDLT access than those living in neighborhoods with a larger White population (AHR, 0.68; 95% CI, 0.59-0.78). CONCLUSION AND RELEVANCE/UNASSIGNED:In this national cohort study, living in or being wait-listed at centers in high-segregation neighborhoods was associated with lower likelihood of LDLT access and candidates living in high-segregation neighborhoods with a larger racial and ethnic minority population compared with a larger White population had lower likelihood of LDLT. Investing in high-segregation neighborhoods to address these structural disadvantages may help improve equity in LDLT access.
PMCID:13231295
PMID: 42228371
ISSN: 2574-3805
CID: 6043712
Empowering Older Adults Through Values-Informed Solutions for Technology Adoption: Protocol for a Feasibility and Acceptability Randomized Controlled Pilot Trial
Hladek, Melissa D; Rubio, Olivia C; Curriero, Samantha; Horn, Samantha; Hughes, Avrey; Wilson, Deborah H; McAdams-DeMarco, Mara; Crews, Deidra C; Szanton, Sarah L
BACKGROUND/UNASSIGNED:Although technology usage is steadily increasing among older adults, adoption and confidence greatly lag behind their younger counterparts. Sociocultural and health disparities intersect with aging to present distinct structural and psychosocial barriers to the adoption of newer technologies. Digital health literacy interventions can improve task-specific skills, technological self-efficacy, and use frequency, but most do not systematically incorporate older adults' values and goals, which are key drivers of sustained behavior change. OBJECTIVE/UNASSIGNED:The proposed study aims to develop and evaluate the acceptability and feasibility of a person-directed, values-based, in-home digital literacy intervention for older adults, entitled values-informed solutions for technology adoption (VISTA). METHODS/UNASSIGNED:VISTA begins with a values and goals discussion rather than a skills test, mapping "What Matters Most" to individualized, SMART (specific, measurable, achievable, relevant, and time-bound) technology goals. Over 8 to 12 weeks, interventionists co-developed personalized learning plans with participants, delivering up to 6 in-home biweekly visits and interim phone calls. The study provided a tablet and assistance with obtaining home internet when needed. Outcomes included digital literacy (Mobile Device Proficiency Questionnaire), technology and chronic disease self-efficacy, social networks, multimorbidity, and frailty (Fried Frailty Phenotype). Feasibility was assessed via recruitment, retention or completion, data collection rates, survey administration time, withdrawal, intervention fidelity, and per-person cost; acceptability was assessed via a postintervention satisfaction survey (Likert and open-ended items) and willingness to recommend. RESULTS/UNASSIGNED:Funding was secured in November 2023. Institutional review board approval, intervention development, and focus groups were completed throughout 2024. Recruitment and baseline assessments occurred from January 2025 to July 2025, enrolling 21 participants and randomizing 11 to immediate intervention and 10 to waitlist control (waitlist participants received the intervention after a 3-month control period). One consented participant was unable to participate early in the intervention and is not included in analyses. Inclusion criteria included being aged 65 years and older, having English proficiency, and demonstrating a willingness to improve digital literacy. Exclusion criteria involved severe cognitive impairment. At baseline, participants had a mean age of 75.7 (SD 7.74) years and were predominantly female (n=13, 65%) and Black (n=19, 95%); most reported having a low income (10/12, 83%), living alone (12/14, 85.7%), and multimorbidity (mean disease count 3.95, SD 2.46). Follow-up assessments concluded in March 2026; data cleaning and analysis are ongoing, with primary feasibility and acceptability findings anticipated for fall 2026. CONCLUSIONS/UNASSIGNED:This protocol offers a unique model centering on the values and goals of older adults to improve access, use, and understanding of technology. Tapping into the motivators of older adults may provide a more beneficial way to encourage older adult technology use. VISTA could be useful in many general contexts, more specifically for older adults who are homebound or have serious illnesses, or as a preintervention for interventions involving advanced technology understanding.
PMCID:13193668
PMID: 42166781
ISSN: 1929-0748
CID: 6038552
Trends in Pregnancy After Kidney Transplantation in the United States
Gao, Chenxi; Menon, Gayathri; Wilson, Malika; Li, Yiting; Bae, Sunjae; Kim, Byoungjun; Orandi, Babak J; Massie, Allan B; DeMarco, Mario P; Mattoo, Aprajita; Kucirka, Lauren M; Segev, Dorry L; McAdams-DeMarco, Mara A
PMID: 42019603
ISSN: 1523-6838
CID: 6032812
The Association Between Post-Kidney Transplant Persistent Hyperparathyroidism and Fracture Risk: A Longitudinal Cohort Study
Stemme, Rachel; Liu, Yi; Hong, Jingyao; Li, Yiting; Done, Joy Zhou; Weller, Jennine; Rudin, Anatoliy V; Brennan, Daniel C; Morris-Wiseman, Lilah F; Segev, Dorry L; McAdams-DeMarco, Mara A; Mathur, Aarti
INTRODUCTION/BACKGROUND:Hyperparathyroidism (HPT) commonly persists following kidney transplant (KT) and can result in bone alterations. However, the association between persistent HPT post-KT and fracture risk is not well-understood. We sought to quantify the association between persistent HPT at 1-year post-KT and fracture risk among KT recipients. METHODS:We leveraged a longitudinal prospective cohort of 344 adult KT recipients who underwent KT at a single institution (12/2008-07/2019). PTH levels were retroactively abstracted, and fractures after 1-year-post-KT were ascertained using ICD-9/ICD-10 codes. Competing risk models were used to estimate the association between persistent HPT (PTH ≥ 70 pg/mL) at 1-year post-KT and the risk of fracture, with death treated as a competing event. RESULTS:Among 344 KT recipients, 227 (66.0%) had persistent HPT at 1-year post-KT. After adjusting for confounders, HPT 1-year after KT was associated with a 3.11-fold increased risk of fractures (95% CI: 1.08-8.91). There were no differences in this association by age, sex, race, eGFR at 1-year-post-KT, osteoporosis at KT, or dialysis vintage. CONCLUSION/CONCLUSIONS:Recipients with HPT 1-year after KT had a significantly higher risk of fractures than those without persistent HPT. Future studies should establish standardized practice guidelines for the treatment of persistent HPT to mitigate fracture-related morbidity and mortality.
PMID: 42062200
ISSN: 1399-0012
CID: 6029662
Prehabilitation moves from theory to practice: time to act? [Comment]
Goodijk, Dagmar; Monbaliu, Diethard; McAdams-DeMarco, Mara A; Pol, Robert A
PMID: 41988275
ISSN: 2072-1439
CID: 6028022
ReFIT study (reversing frailty in transplantation): protocol for a longitudinal study to assess clinical and biomedical changes in frailty through kidney transplantation
Payne, Trent; Shaw, Alyra; Hanjani, Leila Shafiee; Homes, Ryan; Giddens, Fiona; Ravuri, Halley Gora; Yap, Chloe X; Walsh, James; Kumar, Vinod; Garton, Fleur C; Rhee, Handoo; Huang, Alan; Francis, Ross S; Reid, Natasha; McAdams-DeMarco, Mara; Gordon, Emily; Midwinter, Mark; Hubbard, Ruth
INTRODUCTION/BACKGROUND:Losses of functional reserve across multiple physiological systems have been identified in frail patients, yet the exact aetiology of frailty remains unclear. Although strongly associated with chronological age, frailty often develops at a younger age in patients with organ failure. Frailty is prevalent in patients with kidney failure; however, individuals experience improvements in physical frailty measures following kidney transplantation. This makes younger patients with kidney failure a unique population for studying both the accelerated onset of frailty and its reversal. This research project aims to test the hypothesis that frailty secondary to organ failure and age-related frailty are associated with similar molecular and physiological measures. METHODS AND ANALYSIS/METHODS:Gbp/sample). Circulating cell-free DNA/mitochondrial DNA will be quantified through droplet digital PCR. Microcirculation will be assessed via sublingual dark field videomicroscopy with glycocalyx markers measured by ELISA. ETHICS AND DISSEMINATION/BACKGROUND:This study will be conducted with all stipulations of this protocol, and the conditions of the ethics committee approval. Ethical principles have their origin in the Declaration of Helsinki, all Australian and local regulations and in the spirit of the standard of Good Clinical Practice (as defined by the International Conference on Harmonisation). Organs/tissues will be sourced ethically and will not be sourced from executed prisoners or prisoners of conscience or other vulnerable groups.Ethics approval was received by the Metro South Health Research Ethics Committee (HREC/2023/QMS/95392) and ratified by the University of Queensland.Results will be disseminated through peer-reviewed publications, academic conferences, participant newsletters and health organisation collaboration.
PMCID:12958976
PMID: 41771597
ISSN: 2044-6055
CID: 6008342
"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