journal articles
UNDERSTANDING BARRIERS AND FACILITATORS TO SIGNING UP FOR A MOBILE-RESPONSIVE REGISTRY TO RECRUIT HEALTHY VOLUNTEERS AND MEMBERS OF UNDERREPRESENTED COMMUNITIES FOR ALZHEIMER’S DISEASE PREVENTION STUDIES
D. Neffa-Creech, R. Aggarwal, C. Stowell, U. Menon, S. George, A. Plant, J.B. Langbaum
J Prev Alz Dis 2023;4(10):865-874
Background: Alzheimer’s disease (AD) disproportionately affects Black/African American and Hispanic/Latino adults, yet they are underrepresented in AD studies. Recruitment challenges for these populations limit generalizability of findings.
Objectives: This study explores barriers and facilitators to signing up for an AD participant recruitment registry website intended to optimize recruitment of these adults. The registry is geared toward recruitment on smartphones and tablets (mobile devices), as research suggests that mobile-first approaches may be more successful within these populations.
Design: In 2020, we conducted four focus groups (n = 39) and an online survey (n = 1010) with Black/African American and Hispanic/Latino adults. The survey also included Whites as a comparison group.
Setting: Focus groups were in-person at research facilities in New Orleans, Louisiana, and Los Angeles, California. The online survey was distributed by a survey panel company to participants nationwide.
Participants: Black/African American (n = 360), Hispanic/Latino (n = 359), or White (n = 330) individuals, 45-75 years old, who self-reported not having mild cognitive impairment (MCI), dementia, or AD.
Measurements: Barriers and facilitators explored in the focus groups and survey were related to health and AD (e.g., AD-related concerns and past participation/willingness to participate in health or AD studies); current use of mobile devices (e.g., comfort using devices and receptivity to the AD recruitment registry); and participant characteristics and beliefs (e.g., demographics, health literacy level, and trust in government and the scientific community).
Results: The focus groups and survey revealed similar findings. Participants commonly use mobile devices to go online and perform health-related activities. They were aware of AD, expressed concerns with developing it, and were willing to participate in AD-related studies (motivated by personal connection to AD, altruism, and compensation). When presented with the AD recruitment registry, most provided positive feedback (e.g., easy to use and informative) and shared an interest in joining. Barriers to joining the registry with a mobile device included complex or multistep enrollment processes, beliefs that studies are primarily for those with a specific disease, and confusion about how studies can prevent AD among those low-risk for AD. The focus groups also revealed that Black/African American participants expressed more hesitation than Hispanic/Latinos in joining the registry due to greater distrust in the government and scientific community.
Conclusions: Recruiting more Black/African American and Hispanic/Latino participants into AD studies is vitally important. This mixed methods study suggests that adults in these underrepresented groups are motivated to prevent AD and willing to sign up for an AD participant recruitment registry using mobile devices. Most barriers to joining a registry can be addressed through slight modifications to the registry’s design and functionality and by adding content. These findings can help enhance the appeal of joining AD recruitment registries to ultimately enroll more diverse, representative groups of participants and increase the generalizability of AD study findings.
CITATION:
D. Neffa-Creech ; R. Aggarwal ; C. Stowell ; U. Menon ; S. George ; A. Plant ; J.B. Langbaum ; (2023): Understanding Barriers and Facilitators to Signing Up for a Mobile-Responsive Registry to Recruit Healthy Volunteers and Members of Underrepresented Communities for Alzheimer’s Disease Prevention Studies. The Journal of Prevention of Alzheimer’s Disease (JPAD). http://dx.doi.org/10.14283/jpad.2023.67