Updating and refining a study brochure for a cancer registry-based study of BRCA mutations among young African American breast cancer patients: lessons learned

Abstract

The aim of the present study was to update, refine, and evaluate a study brochure to promote participation in a population-based study of BRCA mutations among AA women with a personal history of early-onset breast cancer. A multi-step approach was used to develop this brochure and included: (1) feedback from community members (through a Community Advisory Panel (CAP)) to develop and refine the study brochure, (2) pilot testing of materials with the target audience, and (3) review of pilot testing results with the CAP. Based on the feedback received at each step, the study brochure was refined. In phase 1, the major changes included emphasizing the concept of leaving a legacy and family, using the terms Black and women of color, and use of patient vignettes and photos. In phase 2, attraction and cultural acceptability were identified as two areas for improvement in the study brochure. These results demonstrate that involvement of community members and target study population in the development of a study-specific brochure can provide invaluable feedback to optimize recruitment strategies. This approach can be readily adapted to develop study recruitment materials for individuals from a variety of cultural and ethnic backgrounds.