Latino Community Education Tool on Hereditary Breast Cancer

Institution: University of California, San Francisco
Investigator(s): Laura Fejerman, Ph.D. - Ysabel Duron,  -
Award Cycle: 2017 (Cycle 23) Grant #: 23AB-1201 Award: $30,941
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

This is a collaboration with: 23AB-1200 -

Initial Award Abstract (2017)

Introduction: Breast cancer is the most common cancer in Latinas and the leading cause of cancer death. Latinas tend to be diagnosed later, have poorer survival, and receive poorer quality care throughout the cancer care continuum than non-Latina White women. It has been well documented that women at high risk of hereditary breast cancer, which is cancer that is explained by the presence of changes in specific genes (most commonly two genes called BRCA1 and BRCA2) and that are passed on from one generation to generation, greatly benefit from genetic counseling. Genetic counseling helps individuals and their families make informed decisions about getting tested, to see if they carry the changes in the genes, and enhances selection of early cancer detection or risk-reduction strategies. Despite the growing availability of genetic counseling and testing for hereditary breast cancer, awareness and use of these services is low among Latinas. Multiple studies have shown that U.S. Latinos are interested in learning about hereditary breast cancer. However, the low educational level and lack of access to information and resources are barriers to self-education.

Question(s) or hypotheses: We propose to develop an hereditary breast cancer educational program. The main hypothesis for the research project is that community-based organizations such as Latinas Contra Cancer (LCC) are ideally positioned to lead the development of educational materials for the community and serve as centers for the successful training of community health educators (i.e. Promotores), and as hosts for community education events. Our short-term goal is to develop a set of educational tools for the Spanish-speaking Latino community about hereditary breast cancer.

General methodology: This study is based on the use of observation, community advisory board (CAB) discussions, and focus groups, to inform the development of educational tools. Scientists and Promotores will openly discuss the type and extent of the information to be included in the education tools, and the materials developed will be presented to community members who will provide feedback, which in turn will enhance the content of the program. The conversations that take place during CAB discussions and focus groups will be formally analyzed by scientists and the topics identified will be brought back to the community for further discussion before being incorporated into the education materials.

Innovative elements: To our knowledge, there is no other hereditary breast cancer training curriculum that provides clear, understandable information for a low income, low literacy population that speaks mostly Spanish. The present study will result in the development of a set of tools to educate members of the Latino community about hereditary breast cancer in an effective, linguistically and culturally appropriate manner. The cultural and linguistic concordance between scientist and community is of particular relevance to the project and uncommon in research.

Community involvement: The main research site will be Latinas Contra Cancer, in San Jose, CA. LCC will use their recognized role as a local support organization, as the basis for the recruitment of individuals to be included in the present study. The project will involve the participation of up to 50 people in as many as 10 CAB meetings and focus groups that include: (1) Promotores in the Bay Area, individuals that dedicate their time to sharing health related information and resources with their communities to improve their health outcomes (2) Latino community members in San Jose, CA, including some breast cancer patients. All materials will be designed in accord with what we learn from these groups about their attitudes toward and feelings about hereditary breast cancer related information and about risk assessment.

Future Plans: Our long term goal as a collaborative team is to develop, test, and implement a comprehensive intervention that 1) educates Latinas, in California and beyond, on breast cancer risk, with a specific focus on hereditary breast cancer, 2) identifies high risk individuals, 3) provides counseling, screening and, if necessary, follow-up for risk reduction and/or better health outcomes. The CRC pilot will lay the groundwork for a full CRC study to determine efficacy of the educational approach and materials developed and the implementation of counseling, screening and risk reduction program at a larger scale. Ultimately we will also develop a plan for widespread dissemination, promoting the tools online and through social media, for other underserved, low income and minority communities.