African American experience of FTD: A sub‐cohort assessment of the FTD Insights Survey

Abstract

BackgroundWhile efforts are underway to better understand the prevalence, incidence, pathophysiology, and phenomenology of FTD, most research participation has been dominated by persons of European descent. Better understanding of early signs, the diagnostic journey, and the functional impacts in historically underrepresented groups may help shed light on healthcare inequities, support the development of more inclusive research study design, and lay the foundation for more targeted care and interventions.MethodIn preparation for an Externally Led Patient‐Focused Drug Development (PFDD) meeting, the Association for Frontotemporal Degeneration (AFTD) and the FTD Disorders Registry (FTDDR) collaborated to develop the FTD Insights Survey. The online survey queried aspects of the lived experience of FTD from the patient/family/carer perspective.ResultOf the 1,796 respondents that completed the survey, twenty‐five represented the experience of African American persons diagnosed with FTD from the perspective of those diagnosed (n = 4) and care partners (n = 21). Two additional respondents reported on their experience as African American biological family members of those with FTD. Thirty‐six percent of African Americans needed to see 4 or more doctors before receiving an FTD diagnosis, compared to 18% of total respondents, and were more likely to initially receive a different diagnosis (80% vs. 45%). While patterns of the first symptoms were reported similarly across all participants, African Americans were more likely to report having initially experienced changes in thinking, spatial reasoning, or delusions/hallucinations. African Americans were also more likely to report distress related to language, sleep, and delusions/hallucinations and less likely to report no distress or distress related to cognitive symptoms. African American participants were more likely to endorse wanting a treatment to maintain independence and hold a job than overall participants.ConclusionThe African American perspectives reported on the FTD Insights Survey represent a small sample size of individuals with greater than average levels of education (76% had an Associate’s degree or higher). The experience they report overlaps with those of other respondents, but with key differences including more difficulty in access to timely diagnosis. More information is needed on the lived experience of FTD across people of different cultural, social, economic backgrounds.

Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research

“…This survey revealed that, among patients who received a diagnosis of FTD, the subset of Black/African American and Latino/Latina respondents took longer and consulted with more doctors to obtain their diagnosis. 37,38 It has also been shown that neighborhood-level disadvantage (i.e., low access to care) occurs in association with a lower likelihood of receiving standard diagnostic tests (e.g., structural neuroimaging, laboratory studies 39 ).…”

“…In preparation for a 2021 externally led Patient‐Focused Drug Development meeting on FTD, The Association for Frontotemporal Degeneration and the FTD Disorders Registry collaborated on the FTD Insights Survey, a community‐based online survey of nearly 1800 diagnosed patients, care partners, and family members designed to better understand the lived experience of FTD in the United States, Canada, and United Kingdom. This survey revealed that, among patients who received a diagnosis of FTD, the subset of Black/African American and Latino/Latina respondents took longer and consulted with more doctors to obtain their diagnosis 37,38 . It has also been shown that neighborhood‐level disadvantage (i.e., low access to care) occurs in association with a lower likelihood of receiving standard diagnostic tests (e.g., structural neuroimaging, laboratory studies 39 ).…”