Days spent at home: a patient-centered outcome measure for persons with Alzheimer's disease and related dementias

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Project Summary/Abstract (29/30 lines) The proposed research will study a new application of an emerging patient-centered outcome measure, “days spent at home,” to persons with Alzheimer’s disease and related dementias (ADRD), a population for which there is a shortage of meaningful, easily-captured outcome measures. In 2020, over 5.8 million Americans have ADRD, and the numbers are projected to grow to 13.8 million in 2050. Given that there are currently no cures for ADRD, and effective treatments are limited, the primary goals in caring for persons with ADRD are quality of life, control of behavioral symptoms, and physical independence. However, the measurement of these patient-centered outcomes—what matters most for patients—is challenging because the information can only be obtained through questionnaires or interviews, and these are not routinely collected in clinical practice. Existing research often focuses on cognition, health care utilization, costs, and mortality as outcomes. The lack of meaningful outcome measures has hindered effective organizational and national performance improvement efforts and relevant research. “Days spent at home” is defined as the number or proportion of days alive and spent out of health care facilities in a given period of time, and can be readily calculated using billing data providing an intuitive summary of the medical, behavioral, and psychological consequences of chronic conditions. Research has found patients and their caregivers value “days spent at home” and provided evidence to support the validity of this patient- centered outcome measure. However, the application of this measure to persons with ADRD has been limited and the impact of specific patient factors on “days spent at home” among persons with ADRD has not been well characterized. Using an innovative dataset from the Health Retirement Study, Medicare claims data, and Minimum Data Set that consists of extensive clinical and social information, we aim to (1) determine the burden of ADRD on “days spent at home” by comparing "days spent at home" and the breakdown of days not spent at home (by site of care) across groups stratified by ADRD status and severity, and (2) identify modifiable and unmodifiable risk factors associated with fewer “days spent at home” among persons with ADRD by testing the associations between patient factors and “days spent at home.” This proposed study will build the foundation for future use of “days spent at home” in organizational and national performance improvement efforts and research to improve ADRD care by demonstrating the feasibility of the application of this outcome measure and providing reference data for this outcome among persons with ADRD. Additionally, a set of newly-identified modifiable and unmodifiable risk factors associated with fewer “days spent at home” will inform future targeted interventions.