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.

Early Onset Breast Cancer in a Registry-based Sample of African-American Women:BRCAMutation Prevalence, and Other Personal and System-level Clinical Characteristics

“…There were a number of strengths in this study, including our registry‐based design, which enabled recruitment of a representative sample. Furthermore, our culturally targeted approach to recruitment was likely instrumental in our recruitment success. Finally, our comprehensive approach to data collection enabled verification of clinical data reported through the questionnaire.…”

Imagined Anatomy and Other Lessons from Learner Verification Interviews with Mexican Immigrant Women

“…Though our success in using LVR, this process has been shared by other researchers (Doak, Doak, & Meade, 1996b; Quinn et al, 2006; Vadaparampil & Pal, 2010), but it has not been used extensively in the United States. It has been used in Canada, where recent applications for gaming and simulation illustrate the potential for newer learning approaches (Kaufman & Sauve, 2010).…”

Recruitment of Black Women for a Study of Inherited Breast Cancer Using a Cancer Registry–Based Approach

“…A community advisory panel, comprised of 12 local members of the AA community, was created and convened before initiating population-based recruitment. Through this academic-community partnership, recruitment methods were refined and culturally targeted study recruitment materials were developed (Vadaparampil et al, 2007;Vadaparampil and Pal, In press). Upon approval of the institutional review boards of the University of South Florida and the Florida Department of Health (DOH), registry-based recruitment was conducted between February 4, 2008, and April 30, 2009.…”