Perceptions of clinical trial participation in African American cancer patients: An in-depth qualitative analysis

Clinical trials are vital pathways to the discovery of effective new cancer prevention, treatment and rehabilitation; however evidence shows that African Americans are significantly underrepresented.  To complement the literature on participation barriers and guide development of a  survey and decision-aid , we conducted in-depth interviews with African American cancer patients.  Fourteen female and 2 male patients participated; 44% had and 56% had not participated in a trial.  Utilizing RedCap software, data were coded and intercoder reliability rates were randomly assessed.  Investigators reviewed and developed themes/subthemes, then all quotes were coded by six reviewers. Results indicated eight themes:  Knowledge; Benefits; Disadvantages; Social Support; Decision Influencers; Provider beliefs; Personal history; and, Value of clinical trials.  Those who had participated in a clinical trial felt that it offered them the best treatment, would give them the best chance at survival and would improve their quality of life.  Those who had not participated indicated they were afraid, felt it was “dangerous”, and that it was either against religious beliefs or felt that God had already decided what would happen.  It was clear that those who felt their participation would benefit their community/family were more likely to participate.  Conversely, those who had little trust in medical researchers or felt that doctors misled patients were less likely to participate.  Results indicate that understanding clinical trial perceptions will provide critical information for developing effective methods for designing aids that enhance decision-making, reduce decisional conflict, improve self-efficacy and address provider communication and trust in the African American community.