Development of a lay brochure introducing genetic testing and counseling for BRCA1/2 in women of color Free

B47

Within community based participatory research, it is well-documented that community “experts” possess considerable knowledge that should be relied upon to conduct culturally-relevant research. The aim of the present study was to create a culturally appropriate educational brochure for African American (AA) women, designed to increase knowledge about risk for hereditary breast cancer as well as inform the process of BRCA1/2 genetic counseling and testing. Using the input of a Community Advisory Panel (CAP), a study-specific brochure for a population-based study of BRCA1/2 mutations among AA women with a personal history of early onset breast cancer, was modified to create a culturally appropriate educational brochure suitable for dissemination to AA women. The original study brochure was pilot tested in 7 AA breast cancer survivors and the CAP. Using methods of learner verification, specific input was sought regarding appearance, purpose, target audience, content, and cultural sensitivity. In response to several requests from the CAP to develop a similar non-study specific (lay) brochure that could be distributed to AA women, the study team developed a general informational brochure. The newly created brochure was then re-reviewed by the CAP. The elements of the pilot-tested study-specific brochure, which were incorporated into the lay brochure included: the provision of specific information about hereditary breast cancer and genetic counseling; use of vibrant colors to enhance the visual appeal; use of certain terms to refer to the AA population (e.g., women preferred Black rather than AA, and the use of “women of color” on the front cover to include Black women from the Caribbean). In addition, patient vignettes, with real patient stories and photos were included. While the primary focus of the brochure was hereditary breast cancer, the risk of ovarian cancer was also emphasized. Additionally, a list of national and local cancer education resources was included. All references to study specific recruitment information were omitted. It is very important to develop sustainable community partnerships with patients and community members that will allow for continuous input in the development of culturally sensitive educational materials. By incorporating the CAP recommendations, the study team expects that the lay brochure will provide meaningful information about heritary breast cancer that is appropriate for dissemination to AA women. This lay brochure will serve as the basis for several educational efforts by the study team and the CAP to educate the AA community about risk appropriate use of genetic counseling and testing for inherited breast cancer.