Ethno-racial Variation in Research Priorities of Lewy Body Dementia Patients and Caregivers
Morgan Farley1, Bayram Ece2, Bhavana Patel3, Noheli Bedenfield3, Melissa Armstrong3, Samantha Holden1
1University of Colorado School of Medicine, 2University of California San Diego, 3UF Department of Neurology
Objective:
Investigate Lewy body dementia (LBD) patient and caregiver research priorities by ethno-racial groups with a focus on historically underrepresented populations.
Background:
LBD studies rarely document race/ethnicity or social factors, challenging applicability across different populations. Recognition of the heterogeneity of these patients and their caregivers would allow directed outreach/support as well as tailored research projects and interventions.
Design/Methods:
A web-based survey, distributed through the Lewy Body Dementia Association website and listserv. Topics included demographics, clinical features, research interest, and forced ranking of top 5 research priorities from a list of 19 topics.
Results:
Between 4/7/2021-7/1/2021, there were 984 responses. Of respondents reporting race/ethnicity, 93.8% (n=905) identified as White, 2.0% (n=19) as Hispanic/Latino, 1.7% (n=16) as Black/African American, 1.5% (n=14) as Asian, 0.8% (n=7) as American Indian/Alaskan Native, and 0.4% (n=4) as Native Hawaiian/Pacific Islander. Regardless of race/ethnicity, most respondents indicated interest in research participation (49-100%). The top priority for Black/African American respondents was better end of life care (56.3%, n=9). Black respondents also prioritized identifying strategies to reduce hospitalizations or improve hospital experience (18.8%, n=3) compared to other groups. Improving healthcare provider LBD education was more highly prioritized by Hispanic/Latino respondents (42.1%, n=8) and American Indian/Alaskan Natives (42.9%, n=3). Identifying alternative/complementary medicine approaches ranked highly for Hispanic/Latino (47.4%, n=9) and American Indian/Alaskan Native respondents (57.1%, n=4). The number one research priority for Native Hawaiian/Pacific Islanders was support of caregivers (75.0%, n=3).
Conclusions:
Response rates demonstrate limited reach to non-White populations with our distribution methods. Research priorities differ across ethno-racial groups, particularly surrounding health care interactions and non-pharmaceutical options for symptom management. Emerging patterns of priorities, even with these small sample sizes, are a starting point to increase inclusion and engagement efforts in research. Targeted outreach and engagement of historically excluded groups is vital for health equity in LBD.