This is the first study conducted through a State Cancer Registry, in which the primary goal was to recruit participants for genetic counseling and testing for inherited breast cancer. In contrast to many prior studies, our results suggest that young black women with breast cancer are interested in participating in genetics studies.
1536 Background: Current educational materials about inherited breast and ovarian cancer (HBOC) have not been culturally tailored for the Black community, which may contribute to lower levels of awareness about this topic. Through an academic and community partnership, realized through a Community Advisory Panel (CAP) comprised of breast cancer survivors, advocates, community leaders, and health care providers, this need was identified. Methods: Utilizing a phased approach implemented through this academic and community partnership, a culturally tailored brochure and booklet about HBOC for the Black community were developed and reviewed. To evaluate the brochure, three focus groups were conducted by race-concordant moderators. HBOC was discussed with Black women from diverse backgrounds, including those with and without breast cancer (n = 46). Summaries were created from audiotapes and handwritten notes and content was analyzed based on Grounded Theory, after which the brochure was revised. Similarly, revisions to the booklet were made based on feedback obtained about the brochure. Materials were then presented to the CAP for re-review. Results: From this iterative process, the key content identified as areas for improvement were: (1) Inclusion of breast cancer information specific to Black women; (2) Use of the term “Black”; (3) Inclusion of African American flag colors; (4) Clarification of the concept of genetic counseling; and (5) Enhancing relevance of information for young women. Conclusions: The CAP and study participants recognized the need for culturally relevant educational materials addressing HBOC in the Black community. Their feedback identified important areas for improvement which have been implemented in the design of a culturally tailored brochure that is available for widespread dissemination. Further evaluation of the booklet is currently in progress. No significant financial relationships to disclose.
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