Improving End-of-Life Care for Hospitalized Patients with Lewy Body Disorders

PROJECT SUMMARY Lewy body disorders, a subset of Alzheimer’s disease and related disorders (ADRDs), are the second most common neurodegenerative disorders worldwide and the 14th leading cause of death in the United States. Lewy body ADRDs are progressive, incurable, and mortality rates are rising, making end-of-life (EoL) care a

significant public health concern. The majority of persons with Lewy body ADRDs are hospitalized in their last 6 months of life with high rates of intensive care unit admission, in-hospital death, and low rates of discharge to hospice care. Because these markers of poor care quality are often incongruent with patient care preferences,

urgent interventions are needed to improve EoL care quality in acute care hospitals. Despite this critical need, there are two fundamental knowledge gaps in developing inpatient EoL interventions for persons with Lewy body ADRDs: 1) lack of a prognostic model to determine risk of 6-month mortality and 2) lack of a validated

tool to measure EoL care quality. This proposal requests support for a mentored career development award for Dr. Whitley Aamodt, a movement disorders specialist, neurodegenerative neurologist, and clinical researcher at the University of Pennsylvania. The overarching goal of this project is to improve prognostication and EoL

care quality for hospitalized persons with Lewy body ADRDs by identifying patients at the greatest risk of death and ensuring that hospital-based care is appropriate and aligned with care preferences. In Aim 1, Dr. Aamodt will use comprehensive Medicare data to develop a risk-prediction model for 6-month all-cause mortality in a

nationally representative sample of hospitalized patients with Lewy body ADRDs using advanced predictive modeling. This model will be externally validated in a second cohort of Medicare beneficiaries from the post- pandemic period. In Aim 2, Dr. Aamodt will create, test, and externally validate a patient-centered EoL care

quality instrument based on data gathered from diverse Lewy body ADRD patients, care partners, and practitioners using qualitative research methods and factor analysis. In executing these aims, Dr. Aamodt will obtain additional training in neuroepidemiology, biostatistics, and qualitative research under the guidance of

mentors and advisors in epidemiologic research methods (John Farrar, MD, PhD), neurodegenerative disease epidemiology and health services research (Allison Willis, MD, MS), predictive modeling (Warren Bilker, PhD), qualitative research methods (Katharine Rendle, PhD, MPH), and palliative care research (Scott Halpern, MD,

PhD). The results of this project will provide fundamental knowledge about hospitalized patients with Lewy body ADRDs nearing EoL and will guide the development of future interventions to improve EoL care quality. This work aligns with the strategic goal of the National Institute on Aging to address EoL care needs in ADRDs.

Through the research training and mentorship gained during this career development award, Dr. Aamodt will establish herself as an independent investigator in the field of applied epidemiology, outcomes research, and palliative and EoL care for aging Americans with neurodegenerative diseases.