Faculty Bibliography

More than 6 million persons living with dementia (PLWD) in the United States rely on the emergency department (ED) for unscheduled care, with up to half discharged home after treatment. The ED-to-home transition poses significant challenges for PLWD and their care partners (referred to as "dyads"), contributing to high rates of ED revisits and adverse outcomes. The Community Paramedic-led Transitions Intervention (CPTI) was developed to address these challenges by adapting the validated Care Transitions Intervention for the ED setting. Delivered by trained community paramedics, CPTI is a short-term 30-day program that includes one home visit and up to three follow-up phone calls. Using a coaching model, paramedic coaches work with members of the dyad to strengthen their knowledge, skills, and confidence to manage their health and successfully navigate the health care system. CPTI is being implemented as part of Emergency Departments LEading the Transformation of Alzheimer's and Dementia Care (ED-LEAD), a cluster-randomized pragmatic trial testing 3 interventions designed to improve outcomes for PLWD discharged home from the ED across 14 health systems and 79 EDs nationwide. This paper describes the CPTI model as implemented within ED-LEAD, detailing its theoretical foundation, structure, training curriculum, workflow integration, and implementation monitoring. This framework can provide a model for health systems, provider groups, and emergency medical service agencies interested in adopting this innovative approach and implementing the CPTI. Insights from its implementation within ED-LEAD will guide future efforts to improve post-ED outcomes and continuity of care for PLWD and their care partners.

RATIONALE & OBJECTIVE/UNASSIGNED:Randomized controlled trials (RCTs) show that integrated palliative care can improve symptoms compared with usual care in many serious illnesses, yet there are no comparable RCTs in chronic kidney disease (CKD). STUDY DESIGN/UNASSIGNED:We conducted a pilot feasibility RCT comparing kidney palliative care (KPC) integrated with CKD care with usual CKD care. SETTING & PARTICIPANTS/UNASSIGNED:English and Spanish speakers aged ≥18 years with CKD stage IV and V, or receiving dialysis, seen at an urban safety-net hospital. EXPOSURES/UNASSIGNED:Participants were randomized to usual CKD care or to usual CKD care plus 6-monthly ambulatory KPC visits. OUTCOMES/UNASSIGNED:Primary outcomes were feasibility of recruitment, retention, intervention delivery, and data collection. Secondary outcomes included change in symptom burden at 6 months, measured by the Integrated Palliative Outcome Scale (IPOS)-Renal (lower scores represent lower burden), quality of life measured by the Kidney Disease Quality of Life 36-item survey, and engagement in advance care planning. ANALYTICAL APPROACH/UNASSIGNED:Feasibility outcomes are reported as proportions and clinical outcomes as descriptive summaries of change in scores. RESULTS/UNASSIGNED:Of the 146 people approached, 84 (56%) consented, 75 (89%) were randomized, and 57 (76%) completed the trial. 56% of participants were Hispanic and 32% were Black, with 49% on Medicaid and 13% uninsured. The mean age of participants was 61 years, and 31% were receiving dialysis. A mean of 4-6 intervention visits was attended. At 6 months, the intervention group had a 4.1-point decrease in IPOS score (standard deviation 13.4), whereas the mean IPOS score of the control group increased by 0.6 points (standard deviation 7.8) from baseline. LIMITATIONS/UNASSIGNED:Small sample size and limited number of providers to assess generalizability. CONCLUSIONS/UNASSIGNED:We demonstrate the feasibility of an RCT comparing integrated KPC with usual CKD care in a safety-net hospital. Although this study was not powered to detect significance in change of clinical outcomes, our findings suggest that there is value in testing KPC in efficacy trials and that these are feasible.

Over 50% of persons living with dementia (PLWD) and their care partners (dyads) visit the emergency department (ED) every year. In the ED, healthcare professionals face complex challenges managing acute issues and symptoms of Alzheimer's disease and Alzheimer's disease-related dementias without provider training or in-ED structures to ensure a successful discharge. While many of these visits are for conditions more suitable for ambulatory care, as many as 50% of PLWD discharged from the ED return within 30 days, suggesting opportunities to improve ED care, and discharge processes. Emergency Care Redesign (ECR) includes intentional workflows where physicians, nurses, and social workers engage in a team-based approach with structured assessments to manage a myriad of potential psychosocial and behavioral issues contributing to the need for ED care. Three core components comprise this evidence-based, efficient pragmatic intervention for PLWD and their care partners: (1) problem identification, (2) problem prioritization, and (3) provision of non-pharmacologic solutions supported by community resources. Although these components are essential to provide optimal ED care and reduce revisits and other adverse outcomes, they require an embedded clinical decision support structure, focused training, and clear workflows. In this paper, we describe the ECR intervention as one of three being implemented in the cluster-randomized multifactorial pragmatic trial, Emergency Departments LEading Transformation of Alzheimer's and Dementia Care (ED-LEAD), designed to improve care for PLWD and their outcomes after discharge home within 15 health systems and 79 EDs across the United States.

ObjectivesThe COVID-19 pandemic complicated hospice and palliative care (HPC) experiences of patients and family caregivers. We sought to understand HPC professionals' perceptions of patients' and family caregivers' HPC experiences during the COVID-19 pandemic in New York City and to make recommendations for improving HPC delivery during future public health crises.MethodsThis was a qualitative descriptive study among a purposive, multidisciplinary sample of HPC team members at two large New York City metro hospice care organizations and one outpatient palliative care practice. Following individual interviews, we analyzed demographic data using descriptive statistics and interview data using inductive thematic analysis.ResultsParticipants (n = 30) included nurses, physicians, social workers, chaplains, community health workers, and administrators and averaged 17 years in their profession and 10 years in HPC. Three themes characterized their perspectives on patient and family caregiver HPC experiences. Grappling with Tensions captured strains arising from a time of high patient/family needs and low HPC resources that related to care resources/delivery, patient-caregiver-HPC communication, and hospice policy/guidelines. Managing Dilemmas involved negotiating difficult choices around prioritizing patients for care by diagnosis/need, balancing necessary care and exposure risks, and prioritizing patient visitors (family/professionals). Experiencing Amplifications described intensification of existing HPC challenges including distressing deaths, misconceptions of hospice, family caregiver burden/distress, racial/ethnic disparities, and staff workload and turnover.ConclusionsTo strengthen HPC delivery during crises that disrupt in-person HPC, we recommend enhancing continuity of care, expanding telehealth within hybrid care models, providing structured training and support for family caregivers, improving equitable access to high-quality HPC, and addressing workforce issues.

BACKGROUND:People living with dementia frequently use Medicare skilled home health care and have unique usage patterns as compared to people without dementia, but little is known about variation in measured quality of home health care received by this population. METHODS:Using 2021 Medicare Fee-for-Service Claims data, we examined receipt of high-quality home health (i.e., care from an agency with a star rating > 3.5) as determined by two publicly available measures: the Quality of Patient Care Star Rating (based on standardized clinical status measures) and the Patient Survey Star Rating (based on satisfaction with care reported by patients or caregivers). For each quality measure, we mapped the county-level high-quality-home health agency utilization rate among people living with dementia and compared differences in utilization of high-quality home health agencies by dementia status. RESULTS:We found significant county-level variability in utilization of high-quality home health. When quality was operationalized based on clinical status measures (i.e., Quality of Patient Care Star Rating), dementia patients did not receive care from lower quality agencies. However, when quality was operationalized based on satisfaction with care (i.e., Patient Survey Star Ratings), people living with dementia were less likely than those without dementia to receive care from high-quality home health agencies. CONCLUSIONS:These findings highlight variability in receipt of high-quality home health care among people living with dementia nationally and suggest a need for further investigation as to what constitutes high-quality home health care in this population. To ensure home health meets the unique care needs of people living with dementia, policy makers should work to ensure quality measures are better aligned with the needs of people living with dementia, incentivize access to high-quality home health care where services are limited, and promote systems to improve family caregiver identification and engagement with home health care.

PurposeHospice care is a patient- and family-centered approach to end-of-life care that prioritizes comfort, symptom management, and psychosocial support while foregoing curative treatment. Hospice care improves quality of life and care at the end of life. Despite its benefits, hospice remains underutilized by racially and ethnically diverse people, sexual and gender minorities, and socioeconomically marginalized populations.FindingsGuided by the Social Ecological Model, the objectives of this narrative review are to (a) discuss disparities in hospice care use, (b) explore multidimensional levels and factors contributing to such disparities, and (c) outline implications and imperatives for improving access to and use of hospice care. This review revealed that hospice care disparities are shaped by interacting factors across societal, structural, healthcare system, interpersonal, and individual levels. Historical context, policy design, geographic and socioeconomic constraints, clinician communication, and cultural beliefs collectively influence patterns of access, timing, and utilization of hospice care. System-level solutions include integrating hospice referrals into routine care workflows, improving hospice-related policies, strengthening partnerships with community organizations, and transitional care research. Clinicians are uniquely positioned to identify care preferences, advocate for timely referrals and support the hospice transition, and build trust with patients and families at the end of life.ConclusionsEfforts across clinical settings, policy, and research are critical to improving hospice care use, and ensuring that all seriously ill individuals benefit from goal-concordant, high-quality hospice care. Reducing hospice care disparities will require coordinated, multilevel interventions that address policy and healthcare system factors while strengthening hospice-related communication and care.

BACKGROUND:Black family caregivers of older adults living with dementia are at high risk for physical, spiritual, and psychosocial challenges. Culturally responsive interventions are needed to address disparities in this population. Peer mentorship may improve caregiving support for Black caregivers. The purpose of this National Institute on Aging Stage Model 1A study was to test the feasibility, acceptability, and fidelity of the Peer Support for Black Family Caregivers of Persons Living with Dementia (Pair 2 Care) intervention. METHODS:Pair 2 Care is a culturally responsive, non-judgmental, flexible, co-designed virtual peer support intervention in which former caregivers are paired as peer mentors with current caregivers for 6 months. We enrolled 11 former caregivers (mentors) and 15 current caregivers (mentees) for a total of 15 mentor-mentee pairs. Four mentors were double-paired while maintaining 1:1 mentor-mentee relationships. Mentors' and mentees' activities were monitored using surveys to ensure they were carried out as designed. Feasibility and acceptability were measured by evaluating inclusion and exclusion outcomes, recruitment, and retention data, satisfaction, and appropriateness of Pair 2 Care. RESULTS:All mentors and mentees were female and mostly daughters (65%) who currently or previously cared for an older adult parent who lived with dementia. Pair 2 Care was highly feasible and acceptable based on participant enrollment, mentor training completion, and mentee-mentor pairing within 10 weeks. Former caregiver mentors were retained at 90% and mentees at 93% over 6 months. On average, participants rated their overall Pair 2 Care satisfaction as very high (4.6/5). CONCLUSIONS:Pair 2 Care may provide an innovative strategy to improve family caregiver health outcomes such as quality of life among Black caregivers of Black people living with dementia to promote health equity. As a next step, a fully powered trial is needed to determine Pair 2 Care intervention efficacy. TRIAL REGISTRATION/BACKGROUND:ClinicalTrials.gov: USGOV NCT06064955.

OBJECTIVES/OBJECTIVE:Given the growing housing crisis, researchers increasingly point to housing as a possible risk factor for nursing home utilization, yet the exact pathways from housing to nursing home utilization are unclear. The purpose of this review is to describe how housing acts as a mechanism that influences nursing home utilization in the United States. DESIGN/METHODS:Integrative review. SETTING AND PARTICIPANTS/METHODS:Studies involving individuals at risk for long-term nursing home placement or residents at risk for continued nursing home use in the United States. METHODS:Five databases were searched in April 2024. Articles were included if they (1) operationalized housing pathways as factors in nursing home utilization, (2) focused on long-term nursing home utilization, (3) used data after 1999, and (4) were based in the United States. The quality of articles was assessed and constant-comparative approach guided data synthesis. RESULTS:Sixteen articles met inclusion criteria. Three themes were identified describing housing's influence on nursing home utilization: (1) Housing as Financial Asset vs Strain represents how housing operates as either a protective financial asset or a financial strain that can act as a risk factor for nursing home use; (2) (Mis)match Between Needs and Housing represents how evolving functional needs create misalignments with housing environments, potentially leading to nursing home use; (3) Compounding Systemic Inequities represents how socioeconomic disparities related to housing contribute to risk of nursing home utilization among marginalized communities. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:This review provides evidence of the relationship between housing and nursing home utilization; however, because of a weak quality of evidence and limited methodologic diversity, more research is needed to strengthen the evidence base. Clinicians, researchers, and policy makers should still recognize the significance of the role housing plays in nursing home utilization and target policies and interventions toward improving housing conditions for older adults and people with disabilities.

BACKGROUND:for HNC as a digital patient-reported symptom monitoring system that enables early symptom detection and real-time interventions at the point of care. With this study protocol, we aim to test the effectiveness of the ePVA in improving HNC outcomes in real-world settings and to identify implementation strategies optimizing its effectiveness. METHODS:We will conduct a longitudinal mixed-methods hybrid type I study at four National Cancer Institute-designated Comprehensive Cancer Centers serving diverse populations in rural and urban settings (New York University, the University of Kansas Cancer Center, Fox Chase Cancer Center, and Baylor College of Medicine) guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Patient eligibility criteria include having histologically diagnosed HNC and undergoing radiation therapy with or without chemotherapy for curative intent. We will also interview clinicians caring for patients with HNC at the participating institutions regarding facilitators and barriers to implementing the ePVA. The accrual goal is 270 patients. Aim 1 is to determine the effect of the ePVA on HNC symptoms in a two-arm (usual care vs. ePVA + usual care) trial. The study's primary outcomes are patients' self-reported social function, senses of taste and smell, and swallowing, measured by the European Organization for Research and Treatment of Cancer QLQ-C30 and QLQ-H&N35. For Aim 2, we will interview patients (n = 40) as well as clinicians (n = 30) caring for patients with HNC at the participating institutions regarding facilitators and barriers to implementing the ePVA. In Aim 3, we will integrate Aims 1 and 2 data to identify strategies that optimize the use of the ePVA. DISCUSSION/CONCLUSIONS:The overarching goal of this research is to advance cancer care by identifying implementation standards for effective, widespread use of the ePVA that apply to all patient-reported outcomes in cancer care. TRIAL REGISTRATION/BACKGROUND:ClinicalTrials.gov NCT06030011. Registered on 8 September 2023.