Raising awareness of clinical trials in dementia: A national survey testing concept designs tailored to African American caregivers and individuals at risk

Abstract

AbstractBackgroundLow enrollment of African Americans into clinical trials for Alzheimer’s Disease (AD) and related dementias (ADRD) is partly a result of too few researchers offering trial opportunities and inadequate information that is culturally relevant. The National Institute on Aging (NIA) sought to develop a culturally acceptable/effective toolkit of AD/ADRD clinical trial (CT) outreach materials for community health professionals to use with African American audiences. This abstract presents the results of a national online survey testing several AD/ADRD concept designs with adults/caregivers to guide the toolkit’s development.MethodAn online national panel survey was conducted with African American adults who: 1) had a family history of AD/ADRD (n=206); 2) had no family history of AD/ADRD (n=204); and, 3) were caregivers of persons with AD/ADRD (n=206). Respondents reported their AD/ADRD and CT knowledge/attitudes/intentions; they reviewed four concept designs and indicated preferences/likelihood of each concept to impact five variables (visit website, interest in trials, attention, believability, salience). Concepts featured messages that tested well in focus groups.ResultCaregivers and those at‐risk self‐reported higher familiarity with AD/ADRD signs/symptoms than those with no family history; all groups self‐reported limited understanding of CTs. Two concepts ranked highest among all participants: emphasizing helping future generations and noting that AD/ADRD affects races differently. Most caregivers (61‐87%) and at‐risk participants (46‐89%) gave favorable scores for all impact variables across all concepts, indicating they found most concepts motivating and acceptable. Those with no family history provided lower impact scores (39‐78%). After viewing all concepts: all groups significantly increased (p<.05) their “interest in participating in clinical trials”; and, the at‐risk and no‐history groups were significantly more likely to disagree with “there is nothing I can do to reduce my risk of [AD]”.ConclusionThis research identifies effective AD/ADRD ad concepts that are culturally tailored and acceptable to African Americans nationally, and addresses a known obstacle to recruitment. The combination of the messages/images successfully increased interest in CTs as an option to address AD/ADRD. Using these findings, NIA developed and offers an outreach toolkit to assist community health professionals who do not otherwise have resources to develop their own materials.