RESUMEN
The purpose of this study was to evaluate Asian American caregivers' experiences and concerns related to clinical trials and the types of information they trust, use, and prefer before enrolling their older relative in a clinical trial. We conducted an online, cross-sectional survey with Asian American family caregivers between July 2022 and April 2023. Of all respondents (n = 98), 62.2% reported knowing only a little about clinical trials. Respondents expressed wanting information about (a) the purpose, design, and components of the trial; (b) trial research ethics and safety; and (c) their responsibilities as the caregiver. Greater engagement between clinicians and family caregivers of culturally diverse older adults could help minimize sociocultural barriers to participation in clinical trials. Providing key information to family caregivers in a comprehensive and accessible way without adding burden could help caregivers understand their responsibilities through the clinical trial process.
RESUMEN
INTRODUCTION: Family caregivers of persons with Alzheimer's disease and related dementias (ADRD) have significant responsibilities within health care. They may identify relevant clinical trials and support decision-making about their relative's participation. The objectives of this study were to (a) evaluate the responsibilities of caregivers related to their relative's participation in ADRD clinical trials and (b) examine how these responsibilities are communicated on clinicaltrials.gov. METHODS: We reviewed ADRD clinical trials completed between 1990 and 2021 using clinicaltrials.gov. RESULTS: Less than half of clinical trial study information pages included caregiver responsibilities. Nine caregiver responsibilities were provided among those with information (e.g., giving consent, caregiver training and education, monitoring patient's response to intervention, communicating with study team). DISCUSSION: ADRD clinical trial study information pages should consistently include caregiver responsibilities to help caregivers better prepare for trial responsibilities. This enhanced engagement with caregivers could also facilitate recruitment and retention, including participants from diverse communities. HIGHLIGHTS: Alzheimer's disease and related dementias (ADRD) clinical trial study information does not consistently include caregiver responsibilities. Caregiver responsibilities in clinical trials span communication, monitoring, and transportation. Robust information provision to caregivers could support participant recruitment and retention. Meaningfully engaging caregivers could support recruitment of diverse participants.