Barriers and strategies for sustained participation of African-American men in cohort studies.

BACKGROUND: Prostate cancer incidence is about 70% higher among African Americans compared to Whites. Factors associated with this differential remain unclear, although several studies suggest that genetic factors may play a role. Before epidemiologic research can adequately identify factors associated with this differential, we need studies to determine the feasibility of recruiting and retaining African-American men in cohort studies, especially those that collect biological and questionnaire data.
METHODS: We conducted 4 focus group discussions among African-American men aged 40 to 64 years in North Carolina, and an additional group comprised of their partners, using a semi-structured interview protocol (total N=55 subjects). Data were analyzed with QRS NU*DIST to identify themes.
RESULTS: Participants' willingness to participate in cohort studies seemed to be motivated by a perceived risk of prostate cancer. Barriers to participation included mistrust of the research community, poor knowledge of cancer-site specific heterogeneity, anticipated time commitment, and the invasive nature of disease detection procedures. To foster trust and increase disease knowledge, recommended strategies included: partnering with known civic organizations that provide education on risk factors; discussing early signs and symptoms at the point of recruitment; recruiting participants from community clusters; and providing periodic feedback on biologic samples (if collected) to reassure participants of their proper usage.
CONCLUSION: Observational cohort studies focused on African-American men are feasible if certain barriers to participation are addressed.