Perspectives on Clinical Trial Participation from Underrepresented Older Asian Adults of Chinese Origin

Context: Older adults with multiple chronic conditions are underrepresented in clinical trials, with especially low Asian enrollment.

Objective: Understand perspectives of older Asians regarding clinical trial participation.

Study Design and Analysis: Focus group interviews analyzed using thematic analysis.

Setting: Community/senior centers and large academic health systems in Northern and Southern California.

Population Studied: Mandarin- and English-speaking Asian adults of Chinese origin (AsC) aged 65+ and self-reporting taking ≥5 prescription medications.

Outcome Measures: Themes related to barriers and facilitators of participation in clinical trials of medications.

Results: We conducted 12 focus groups, 7 with foreign-born and 5 with US-born AsC older adults (n=83 participants). Mean age was 74 years (SD=5.9), 41 women (49.4%), and 47 (56.6%) Mandarin-speaking. Participants took a mean of 6.1 prescriptions (SD=1.5, range 5-12). Major obstacles to participation included: lack of awareness and knowledge of clinical trials, poor English-language proficiency (necessitating assistance from children), and poor awareness of trials by community-based Asian physicians. Culture-specific themes included: reluctance to share health information with others (including family), “lack of courage” (胆小) due to fear of the unknown or adverse outcomes, and preference for herbal supplements. All groups attributed low clinical trial enrollment to primarily be an issue of foreign-born Chinese. US-born participants expressed greater understanding and willingness to join trials and gave less weight to opinions of family members. Suggested facilitators to enrollment included using culturally tailored materials/personnel, educating community-based Asian physicians, community-based outreach, and promoting trials on conditions common in Asians.

Conclusions. Older Asian adults of Chinese origin perceived obstacles to clinical trial participation that could be mitigated by using culturally tailored materials/staff for trial conduct, and by educating patients and clinicians in the community. Recognition of differences in attitudes among US- and foreign-born older Asians of Chinese origin may be important for tailoring recruitment strategies.