DEploying High ValuE LOngitudinal Population-Based dAta in Dementia Research (DEVELOP AD Research)
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PROJECT SUMMARY As the aging pyramid squares, healthcare systems face unprecedented numbers of older adults living with serious chronic illness, escalating costs, and reductions in available caregivers. These challenges are greatly magnified in the setting of Alzheimer’s disease and related dementias (ADRD). Living with ADRD is characterized by physical and psychosocial suffering, mismatches between patient goals of care and treatments received; high physical, psychological, and financial burdens on families and the health system. This program project, Deploying High Value Longitudinal Population-based data in Dementia Research (DEVELOP AD RESEARCH), breaks new ground by employing rich population-based data to develop a comprehensive longitudinal understanding of dementia that will better inform clinical and policy interventions and improve healthcare for persons with dementia and their families. Methodological constraints have limited the ability to examine the complex longitudinal interplay of medical, social, and system factors known to influence health, healthcare, and quality of life and death for persons with dementia. The need to enroll samples large enough to account for the population’s heterogeneity, the necessity of gathering data from patients and caregivers across diverse care settings, difficulties collecting social determinants of health data due to budgetary and primary data collection effort constraints, and a duration of illness that exceeds standard 5-year grant funding periods have limited the ability to answer important questions. The Health and Retirement Study (HRS) and the National Health and Aging Trends Study (NHATS) are ongoing NIA funded population-based studies that contain rich longitudinal patient and family health, social, and economic data and, through their linkages to CMS claims, comprehensive information on health service utilization and costs. Due to their maturity, numbers of participants, retention rates, sampling frames, and validated algorithms for identifying dementia, both datasets are now able to provide sufficient sample sizes, variables, and longitudinal follow-up to begin to address existing gaps in dementia research. Marshalling pre- existing resources and highly productive collaborations among project investigators, we break new ground by proposing integrated research that examines the complex longitudinal interplay of medical, social, and system factors known to influence health, healthcare, and quality of life and death for persons with dementia. Our five research projects address major questions in dementia science whose answers demand the use of the population-based data now available through NHATS and/or HRS. Our two resource cores support the complex analytics required of each research project, integrate and coordinate research activities, disseminate findings and data resources including programming code and data dictionaries, create a platform of research to support early-stage investigators, and identify future directions and research collaborations.
RCB PROJECT SUMMARY The proposed program project, Deploying High Value Longitudinal Population-Based data in Dementia Research (DEVELOP AD RESEARCH), will leverage two national, longitudinal, population-based studies, the Health and Retirement Study (HRS) and the National Health and Aging Trends Study (NHATS), both of which are linked to Centers for Medicare and Medicaid Services (CMS) claims and assessment files, to expand our understanding of the longitudinal course of dementia and the complex interactions of medical, social, and health system factors. Research Core B (RCB) – Quantitative Analytics and Data Management will support the goals of the P01 and its five research projects through four specific aims: 1) To consolidate HRS, NHATS, and linked CMS database management activities to promote scientific rigor and efficiency throughout the P01; 2) To build the processes and infrastructure, including staff and investigators, to maximize efficient and synergistic application of our knowledge and resources; 3) To provide state-of-the-art quantitative analytic support for research projects; 4) To create and disseminate a library of publicly available web-based technical assistance material to advance geriatric palliative care and dementia research. Comprised of scientists from the University of California San Francisco and the Icahn School of Medicine at Mount Sinai, the core creates a transdisciplinary research team of clinician scientists, health services researchers, economists, epidemiologists, and biostatisticians with expertise in the novel and complex programming, analytic tools, and statistical methods that are required to effectively use the HRS and NHATS datasets to examine the complex issues that arise across the disease course from dementia diagnosis to death and provide answers to relevant clinical and policy questions in dementia care. RCB is the means through which synergies and efficiencies in quantitative analytic expertise and database management will be achieved in order to successfully complete the proposed work in each research project. RCB leaders, Drs. Boscardin and Kelley, have the expertise and experience to accomplish the RCB’s aims through active collaboration with research project investigators, consultants and analytic staff - all of whom have extensive expertise in managing and analyzing Medicare linked HRS and NHATS data. RCB will consolidate database management activities by centralizing administrative and regulatory functions; creating and cataloging a unified set of variables to be used by all research projects, merging and cleaning datasets needed for the individual research projects including creating longitudinal hierarchical datasets for analyses, and performing all associated documentation.
RP1 Project Summary: Background: Healthcare spending is highly concentrated among a small seriously ill population and, despite high spending, quality of care for this group is often low, marked by poor communication, high burden of pain and other symptoms, and preference-discordant treatments. A key subset of this seriously ill population, persons with dementia (PWD), may experience the greatest burden of serious illness due to dementia’s long course of illness, progressive functional impairment, and high degree of caregiver strain, the impact of which is often magnified among vulnerable and underserved subgroups. These issues are not well characterized over the course of illness and very little is known about the experience of those with both dementia and another coexistent serious illness, such as advanced cancer or heart failure. Aims: This project aims to contribute rich, prospective patient-centered evidence examining the longitudinal experience of PWD and another coexistent serious illness and their families with additional focus on disparities in outcomes among socially vulnerable and underserved populations. We will: 1) examine among PWD the prevalence of another coexistent serious illness over time until death; 2) evaluate differences in treatment intensity (i.e., total Medicare costs, total hospital days, days away from home) annually and cumulatively until death, among person with dementia alone and those with dementia and another serious illness; and 3) assess differences in patient and family experience of care (i.e., caregiving hours, caregiver strain, care-setting transitions, nursing home admission and in-hospital death), among persons with dementia alone and those with dementia and another serious illness. In each aim, we will study differences across vulnerable subgroups. Methods: We will assemble a novel, prospectively-framed sample of PWD combining the nationally- representative Health and Retirement Study (HRS) and National Health and Aging Trends Study (NHATS) cohorts and follow them through the full course of dementia until death. Using currently available data, we will capture over 7000 individuals at the interview when probable dementia was first identified, and combine their longitudinal survey data with Medicare claims data through time of death, to investigate differences in treatment intensity and experience of care between those with dementia alone and those with dementia and another serious illness (e.g., advanced heart failure). Public Health Significance: Older adults with dementia and another coexistent serious illnesses and their families are at risk for suffering due to low-quality, high-cost care, yet little prospective data on their experiences exist. This project will examine the longitudinal experience of PWD and their families beginning when dementia was first identified, and compare these experiences to those with another serious illness, such as advanced cancer or heart failure. By examining patient and families’ experiences prospectively and over the full course of illness, we can begin to appropriately target the interventions needed to improve care.
