Project Summary Evidence indicates that individuals with Alzheimer's disease and related dementias (ADRD) often receive suboptimal care at the end of life (EOL). Although patient factors (e.g., socioeconomic status, caregiver support) clearly affect the quality of EOL care, studies also demonstrate wide variations in how physicians and health systems treat terminally-ill patients. However, existing studies on the quality of palliative and EOL care have been focused primarily on patients with cancer, and evidence is limited as to the quality of EOL care for persons with ADRD. Indeed, little is known about physician and health system factors that are associated with the quality of palliative and EOL care for persons with ADRD. These knowledge gaps have hindered efforts to develop interventions that can effectively improve the quality of EOL care for persons with ADRD. The proposed R01 will create a comprehensive, multi-level database that includes detailed information about patients, physicians, and health systems, by linking three large, nationally-representative datasets: (1) Medicare claims data (patient factors), (2) Doximity Physician Database (physician factors), and (3) RAND Health System Database (health system factors). In Aim 1, using this innovative database, we will identify physician factors (e.g., age, sex, clinical experience, specialty, residency and fellowship training in geriatrics and/or palliative care) that are associated with the quality of EOL care (defined as (1) the receipt of advance care planning, palliative care, and hospice, (2) aggressiveness of EOL care, and (3) patient outcomes) for persons with ADRD. In Aim 2, we will identify health system factors (e.g., academic medical centers, profit status, size, region, ACO status) associated with the quality of EOL care for persons with ADRD. In Aim 3, focusing on physicians who practice at multiple health systems (about 21% of physicians practice at multiple health systems), we will investigate whether health system factors influence physicians' aggressiveness of EOL care for persons with ADRD. The proposed R01 will provide a unique opportunity to advance the field by better understanding the mechanisms of how physicians and health systems affect the quality of EOL care provided to persons with ADRD, with a special focus on mutable physician factors (e.g., education and training in geriatrics and/or palliative care) and health system factors (e.g., financial incentives) that contribute to the quality of EOL care. This project will provide a strong evidence base for developing interventions (e.g., CME for physicians targeted at palliative and EOL care for persons with ADRD, financial incentives for ACOs), which can effectively improve the quality of care for persons with ADRD at the EOL. The research team consists of multiple NIH-funded researchers with expertise in all relevant fields (health services research using big data, Alzheimer's disease and dementia research, palliative and EOL care research, and health system research) to conduct this innovative research. The proposed study aligns well with the NIA's FOA to address clinical and translational research gaps to improve quality EOL care for people with ADRD and their families.

Project Narrative Evidence indicates that individuals with Alzheimer's disease and related dementias (ADRD) often receive suboptimal care at the end of life; however, its underlying causes and the strategies to effectively improve the quality of care at the end of life for ADRD have not been investigated well. Using an innovative database that includes comprehensive information on patient, physician, and health system factors, the investigators will identify key physician and health system factors (with a special focus on mutable factors, e.g., physician training in geriatrics and/or palliative care, and financial incentives targeted at health systems) associated with the quality of care for persons with ADRD at the end of life. This research has the potential to offer novel approaches for unraveling physician- and health system-level determinants of the quality of palliative and end-of-life care for persons with ADRD, and to provide a strong evidence base for developing actionable interventions that can effectively improve the quality of care for persons with ADRD at the end of life.