Citations

Introduction Clinical Research Coordinators (CRCs) serve as the frontline staff for research participants in studies on frontotemporal degeneration (FTD), directly influencing participant experience. The training adequacy, job satisfaction, and retention of FTD CRCs have not been systematically examined. Methods The Association for Frontotemporal Degeneration (AFTD) administered an anonymous cross-sectional online survey to CRCs affiliated with research networks across the USA and Canada. Results Thirty-seven CRCs responded. Most had more than 3 years of experience, yet 62% reported encountering situations for which they felt inadequately prepared. Information on genetics, symptom management, and brain donation were identified as critical training gaps. Retention was linked to competitive pay and clear career advancement opportunities. Discussion The findings highlight a critical need for formalized, disease-specific onboarding and emotional support systems tailored to CRCs that engage with FTD patients and families. AFTD is developing a modular training curriculum to standardize CRC competency.

Rural populations are underrepresented in cognitive impairment research and have limited resources for education about brain and cognitive health, Alzheimer's disease and related dementias, or caregiving. As our Outreach, Recruitment, and Engagement team aimed to expand activities into more rural communities, we also wanted to better understand the characteristics of the communities surrounding our center and gain insight into the social exposome of the areas. The goal of the manuscript is to reflect on our experience and share measures that were useful in this effort, which can be further enriched and adjusted by other outreach teams.

1503 Background: CAR T-cell therapy has revolutionized treatment outcomes in hematological malignancies, but has traditionally required inpatient post-infusion monitoring, which is associated with significant cost and time toxicity. Outpatient CAR T infusion and monitoring has been the standard approach at Mayo Clinic site in Rochester, MN, with demonstrated feasibility and safety (Bansal et al., ASCO 2023). We present data comparing healthcare utilization between CAR T recipients who underwent outpatient remote monitoring and those with traditional inpatient monitoring. Methods: Electronic medical records were retrospectively analyzed for 293 patients who received CAR T-cell therapy for a hematological malignancy at any of the 3 Mayo Clinic sites (MN, AZ, FL) between 2020 and 2024 . Healthcare utilization was compared between patients who received outpatient CAR T with remote patient monitoring in Rochester, MN (N = 125) and those who received inpatient CAR T in the Arizona (n = 90) and Florida (n = 78) sites. Per protocol, patients in the inpatient group underwent mandatory inpatient monitoring for 7 days, with extension per provider discretion. Data was analyzed through Chi-Square and Wilcoxon tests. P values < 0.05 were considered statistically significant. Results: There was no significant difference in baseline sex, age, ethnicity, LDH, platelets, or neutrophils among the 293 patients. Diagnoses included lymphoma (n = 175), multiple myeloma (n = 106), and B-ALL (n = 12). The most common CAR T-cell products used were axicabtagene ciloleucel (n = 138) idecabtagene vicleucel (n = 56), and ciltacabtagene autoleucel (n = 50). Median hospital days were lower in the outpatient group vs the inpatient group at 30 days (4.4 vs 13.3, P < 0.001) and 90 days (4.6 vs 13.6, P < 0.001). ICU admission occurred in 1 outpatient patient ( < 1%) vs 18 inpatient patients (11%) in the first 30 days (P < 0.001). In the first 30 days, 22% of patients in the outpatient group did not require hospitalization, while 56%, 15%, and 6% required 1, 2, and 3 hospitalizations, respectively. Similarly, only 11 (8.8%) patients in the outpatient group had ≥1 ED visit in the first 30 days compared with 32 (20%) pts in the inpatient group (P = 0.009). At 30 days, there was no difference in patient portal use, with 58% of patients using the portal at least once and a median of 1 message in both groups. Within the first 30 days, 53% and 2% of patients in the outpatient group required 1 and 2 outpatient visits, respectively, vs 29% and 2% in the inpatient group (P < 0.001). There was no difference in 30-day mortality (1.6% outpatient vs 2.4% in inpatient) between the 2 groups (P = 1.00) Conclusions: Outpatient CAR T-cell therapy monitoring was associated with significantly fewer hospital days without increased ED visits, ICU stays, portal use, or 30-day mortality. This demonstrates lower healthcare utilization for outpatient CAR-T therapy.

Abstract Background Despite the reported benefits, lung cancer screening (LCS) uptake remains alarmingly low in comparison to other cancer screening programs. Objective To develop and evaluate an automated, electronic health record (EHR)-embedded LCS outreach program designed to increase screening uptake while minimizing workload for referring providers and schedulers. Methods We developed an automated outreach and referral program at two Mayo Clinic campuses (Rochester [RST] and northwest Wisconsin [NWW]) coupled with a streamlined virtual care delivery process. Eligible patients were identified based on the information in the EHR regarding US Preventive Services Task Force guidelines for screening and were contacted through either a patient portal message, letter, or both. Outreach included LCS educational materials and self-scheduling instructions for a telephone or video shared decision-making (SDM) visit. During the visit, a licensed care team member discussed the risks and benefits of a low dose computed tomography (LDCT) scan with patients who could choose to enroll in the Lung Cancer Screening Program or decline. Results During the study period, 8,845 eligible patients (RST: 2201, NWW: 6644) were contacted using automated portal messages, letters, or both. Among the RST cohort, 2,156 portal messages and 1,060 letters were distributed in comparison to 7,642 portal messages, 6,441 letters, and 618 text messages in the NWWI cohort. The study showed increase in shared decision-making visits completion and screenings for eligible patients across both groups. Portal engagement was higher among the RST group 75.4% than 55.8% in the NWWI group, as was digital brochure access (14.1% vs 6.5%). Scheduling for share-decision-making visits was noted to be higher among the RST group (22% vs 13.6%), though visit completion rates were similar across sites (12.6 vs 13.6%). A lower opt-out rate was noted among the RST group (12.6% vs. 14.3%). Collectively, both campuses demonstrated meaningful patient engagement. Conclusion The automated outreach program effectively increased lung cancer screening engagement and uptake for eligible patients without adding significant administrative burden on primary care providers and clinical staff. Observed differences in engagement between sites, as well as relatively low completion rates highlight the need for further investigation into contextual and operational factors influencing program performance. This abstract is funded by: none

Background Dementia with Lewy bodies (DLB) is a common degenerative dementia, but no studies investigate bereaved caregiver experiences. Objective To investigate the experiences of caregivers three months after the death of persons with DLB using a mixed-methods approach. Methods Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were followed prospectively every 6 months until the person with DLB died. Caregivers completed a study visit with questionnaires and a semi-structured interview ∼3 months later. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of post-death measures with pre-death patient and caregiver variables. Thematic analysis was used to analyze the interviews. Results Seventy-three caregivers completed visits (mean 3.5 months post-death). Most of the caregivers were women (82.2%) and spouses (76.7%) or adult children (17.8%). Over 40% had scores indicating risk for clinical depression. Post-death caregiver experiences (depression, quality of life, grief, resilience) correlated with pre-death caregiver experiences. Post-death experiences did not associate with patient characteristics, disease-related symptoms, or healthcare services used in the last 6 months of life. Trajectories for caregiver measures from pre- to post-death visits varied widely. Interview themes included grief and sadness, anger, guilt and regret, relief, appreciation/gratitude, and adjusting to a new normal. Conclusions The finding that pre-death caregiving experiences have the strongest association with post-death experiences emphasizes the critical importance of accessible and evidence-based caregiver support before and after the death of a person with DLB. Research is needed to develop interventions for current and bereaved caregivers of individuals with DLB. Trial registration information NCT04829656 (submitted 2021-03-22).

e13890 Background: Many oncology practices have reported continued use of telemedicine since onset of the COVID-19 pandemic. However, the future sustainability of telemedicine within oncology practices remains unclear, particularly because federal policies that enabled adoption in response to the public health emergency (PHE) have not been made permanent. Understanding similarities and differences in telemedicine utilization at high-volume oncology centers is crucial for shaping evidence-based policy that enables equitable access to oncology care across varying geographies. Methods: This is a cross-sectional, year-over-year, retrospective cohort analysis of trends in telemedicine utilization across all medical oncology clinical appointments conducted among adult patients (age >18) from January 2019 to December 2023 at Stanford Medicine Cancer Center (SM) – comprising multiple campuses in the California Bay Area – and the Mayo Clinic Comprehensive Cancer Center (MC) – a multiregional cancer practice with tertiary referral campuses in Minnesota, Florida, and Arizona, as well as community-based clinics throughout the Upper Midwest. Results: Both institutions exhibited a similar trend in telemedicine adoption over time. This was characterized by an initial surge in utilization following the PHE declaration in March 2020, followed by sustained utilization rates from 2021 to 2023. However, telemedicine use as a proportion of the overall practice differed significantly between institutions. At SM, the rate of telemedicine visits as a proportion of overall clinical practice was 60.3% (49,136/ 81,502) in 2021, 59.9% (52,247/ 87,215) in 2022, and 57.2% (55,007/ 96,163) in 2023. At MC, the proportion of telemedicine utilization was 12.8% in 2021 (23,873/186,086), 14.7% in 2022 (28,985/196,777), and 14.0% in 2023 (30,208/215,941). Deployment in the setting of new versus return visits also differed between institutions. In 2023, telemedicine accounted for 53.7% (6,440/11,998) of new and 57.7% (48,567/84,165) of return visits at SM, compared to 15.5% (3,359/21,728) and 13.8% (26,849/194,213) at MC. Additionally, while video visits were the predominant modality used to conduct telemedicine visits at both institutions from 2021 onward, in 2023 phone visits still made up 17.9% (5,394/30,208) of all telemedicine visits at MC, compared to just 5.4% (2,990/55,007) at SM. Conclusions: Stanford Medicine and Mayo Clinic exhibited a pattern of initial growth of telemedicine adoption in 2020, followed by sustained utilization from 2021-2023. We observed unique differences in the overall proportion, visit type deployment, and modality of telemedicine utilization between institutions. However, this study confirms telemedicine visits have remained a fixture of medical oncology care for many patients at these institutions since the COVID-19 pandemic.

AbstractINTRODUCTIONLittle is known regarding quality of life (QoL) in dementia with Lewy bodies (DLB), particularly in advanced stages.METHODSDyads of individuals with moderate–advanced DLB and their primary caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease‐related measures, and measures of patient/caregiver experiences.RESULTSThe Quality of Life in Alzheimer's Disease (QoL‐AD) was completed by the person with DLB and the caregiver (proxy) in 61 dyads; 85 dyads had only a proxy‐completed QoL‐AD. Patient‐ and proxy‐reported scores were moderately correlated (r = 0.57, P < 0.0001). Worse patient‐reported QoL correlated with daytime sleepiness, autonomic symptom burden, and behavioral symptoms. Proxy ratings correlated with dementia severity, daytime sleepiness, behavioral symptoms, dependence in activities of daily living, and caregiver experience measures.DISCUSSIONPatient‐ and proxy‐reported quality of life (QoL) should be assessed separately in advanced DLB. Some symptoms associated with QoL have available therapeutic options. Research is needed regarding strategies to optimally improve QoL in DLB.Highlights Patient and proxy quality of life (QoL) ratings had moderate correlation in advanced dementia with Lewy bodies. Daytime sleepiness affected patient‐ and proxy‐reported QoL. Behavioral symptoms affected patient‐ and proxy‐reported QoL. Autonomic symptom burden affected patient‐reported QoL. Dementia severity, dependence, and caregiver experiences affected proxy ratings.