Stroke is a leading cause of serious long-term disability in the United States. Women and African Americans commonly have poorer functional outcomes after stroke, although the reasons for these gender and race differences are poorly understood. Some of the differential impact of stroke on women and African Americans might be explained by differential acute treatment and post-acute rehabilitative services, and by differential support of informal family caregivers. These factors have rarely been studied in representative population- based samples of stroke survivors. This application seeks funding to study these factors in a national sample of stroke survivors who are also Medicare beneficiaries. The Caring for Adults Recovering from the Effects of Stroke (CARES) study is an ancillary study of the national REasons for Geographic and Racial Differences in Stroke (REGARDS) project and is the only study of its kind that is systematically collecting long-term functional outcome data from the survivors of verified incident stroke events that are detected in a large-scale, prospective, epidemiologic investigation. Primary family caregivers are also enrolled in the CARES project, and to date, 210 stroke survivor/ family caregiver dyads have been enrolled. Most of these stroke survivors (N = 183, 87%) are traditional Medicare beneficiaires for whom Medicare claims data for the acute hospitalization and post-acute rehabilitative or recovery phase are available. Stroke survivor functional outcomes are assessed during structured in-home evaluations approximately one year after the incident stroke events, and stroke survivor and family caregiver psychosocial functioning and quality of life are assessed with structured telephone interviews beginning 9 months after the incident stroke event and continuing up to 3 years after the stroke event. As part of this proposed extension to the CARES project, we will expand our inclusion criteria to include more stroke survivors, including those without family caregivers, and our total sample size will increase to 420 stroke survivors, including 365 who are also traditional Medicare beneficiaries. While continuing to study outcome disparities among all stroke survivors, new specific aims are advanced in this proposal that focus on measures of health care utilization from the Medicare claims data. Most of the previous studies on care utilization after stroke and the long-term outcomes of stroke have not assessed the influences or experiences of informal family caregivers, and we hypothesize that differences in caregiver availability and involvement will partially explain previously observed gender and race differences in care utilization and functional outcomes. The CARES project is uniquely positioned to link demographic variables, stroke severity measures, post-stroke care utilization patterns, informal caregiving factors, and long-term functional outcomes in ways that will add new knowledge to the literature on why women and African Americans have poorer outcomes after stroke. The project will also advance our general understanding of how stroke affects both patients and their families more broadly.

Public Health Relevance

Stroke is a common medical problem for older adults. Most of the formal rehabilitative care after stroke is covered by traditional Medicare claims, and most stroke patients also receive considerable informal care from close family members. The proposed research will examine the links between informal caregiving support, formal care utilization, and long-term stroke outcomes using a national epidemiologic sample. Caregiving supports during the acute hospitalization and post-acute rehabilitative phases are expected to differ by race and gender, and to partially account for previously observed race and gender differences in outcomes.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Research Project (R01)
Project #
5R01NS075047-03
Application #
8323261
Study Section
Health Services Organization and Delivery Study Section (HSOD)
Program Officer
Odenkirchen, Joanne
Project Start
2011-09-01
Project End
2016-06-30
Budget Start
2012-07-01
Budget End
2013-06-30
Support Year
3
Fiscal Year
2012
Total Cost
$386,332
Indirect Cost
$39,686
Name
Johns Hopkins University
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
001910777
City
Baltimore
State
MD
Country
United States
Zip Code
21218
Roth, David L; Haley, William E; Hovater, Martha et al. (2013) Family caregiving and all-cause mortality: findings from a population-based propensity-matched analysis. Am J Epidemiol 178:1571-8
Perkins, Martinique; Howard, Virginia J; Wadley, Virginia G et al. (2013) Caregiving strain and all-cause mortality: evidence from the REGARDS study. J Gerontol B Psychol Sci Soc Sci 68:504-12