Increasing awareness and interest in AD/ADRD clinical trials using culturally tailored messages: A synthesis of three national surveys, 2019–2021

Abstract

AbstractBackgroundLimited participation of Black/African American (B/AA), Hispanic/Latino (H/L), and Asian American & Pacific Islander (AAPI) communities in AD/ADRD clinical trials (CT) is partly due to few researchers offering trial opportunities and inadequate CT information that is culturally relevant. We present the results of three National Institute on Aging (NIA) national surveys conducted with B/AA, H/L, and AAPI samples to assess the impact of culturally tailored outreach materials for each group, respectively, on individuals’ likelihood to consider participating in CTs.MethodOnline panel surveys were conducted with B/AA (N = 616; 2019), H/L (N = 545; 2020), and AAPI (N = 756; 2021) individuals who: 1) had a family history AD/ADRD, 2) were caring for an individual with AD/ADRD, or 3) reported no family history of AD/ADRD. The surveys assessed if viewing creative concepts (four print/photo ads developed specifically with and for each population using focus groups) positively impacted participants’ likelihood to consider participating in an AD/ADRD CTs.ResultAfter reviewing their respective ads, B/AA and H/L at‐risk, caregiver, and healthy audiences, and AAPI at‐risk individuals, all significantly increased their reported pre‐posttest “likelihood to consider a CT”. AAPI caregivers started with and maintained a high level of interest but did not change their likelihood to consider a CT. Across all groups, there was a median 12.5% increase of individuals reporting “very” or “extremely interested” in AD/ADRD CTs. Persons with family history had greater increases among B/AA and AAPI, while caregivers did among H/L. Motivating CT messages for all groups were: help/hope for their future generations (family/community) the potential to prevent/treat the disease. B/AA respondents also were motivated to find treatments that could work for all races.ConclusionThe findings highlight that culturally appropriate outreach materials, developed with and for specific groups, can generate significant interest in participation of AD/ADRD clinical trials after viewing only four ads. Though common themes emerged, focus groups and surveys indicated specific yet critical nuances differentiating message preferences across B/AA, H/L, and AAPI groups. This is the only known research to systematically explore AD/ADRD CT communication needs within and across traditionally underserved populations.