We conducted semi-structured interviews with PLHIV receiving care at the UNC ID clinic. We used purposive sampling based on trial participation with oversampling for non-participation and African American race. Trial participation was defined as current or previous enrollment in an intervention trial lasting >48 weeks; non-participation was being offered but refusing to participate in a trial. Themes identified as barriers or motivators to participation were organized by 4 levels of influence: individual, provider, clinic-level, and clinical trial level and further differentiated by trial vs. non-trial participation.
From February-September 2014, 26 PLHIV (10 trial; 16 non-trial participants) were enrolled in the study. Participants median age was 53.5 yrs, 34.6% were female, 61.5% were black, median CD4 count was 620cells/mm3 and 92% had a viral load <40c/ml. Motivators of trial participation were the opportunity to contribute, improved access to care, patient-provider trust, patient-clinic trust, informed decision making and social support. Barriers to participation were fear of disrupting current medication regimen, not receiving information about the trial from their provider, having confidentiality compromised, invasive procedures, inadequate incentives and scheduling. More trial than non-trial participants cited desire to contribute and improved access to care as a motivator to participation (70% vs. 31.3% and 70% vs. 12.5% respectively). Contrasting trial with non-trial participants the motivators of social support (40% vs. 31.3%) and shared decision making appeared equally important (10% vs. 18.8%).
The study findings provide insights into perceptions that influence enrolment in HIV clinical trials and may guide investigators when targeting recruitment and retention efforts especially in the southern US.
J. Margolis, None
C. Marcus, None
J. Eron, Janssen: Consultant , Consulting fee and Research grant
Gilead: Consultant , Consulting fee
R. Teal, None