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Project Title: Breast Cancer Genetics Education Materials and Programs Development Phase I: Development of a Survey to Assess Breast Cancer Knowledge, Attitudes, and Behaviors Among African Americans, Appalachians, Asian Americans, Hispanics/Latinos, and Native Americans.

Abstract:

The National Cancer Institute's Special Populations Networks for cancer awareness, research and training program and the National Cancer Institute's Cancer Genetics Network have formed a unique partnership with the Susan G. Komen Breast Cancer Foundation to investigate knowledge, attitudes and behaviors regarding breast cancer genetics among five diverse ethnic groups. This landmark collaboration is planned for three phases with significant scientific or public education results at the conclusion of each phase. The Susan G. Komen Breast Cancer Foundation has provided funding for Phase 1, with Phases 2 and 3 funding to come from other sources. The Redes En Acción National Network Center at Baylor College of Medicine is coordinating Phase 1 activities, which will culminate in the development of a comparable, standardized survey instrument that is common across all the groups. Phase 2 will involve implementing the survey and analyzing the results. Phase 3 will involve developing education materials and programs based on those survey results. The vision for this project is to develop unique and multifaceted collaborations among members of the NCI Special Populations Networks (SPN), the NCI Cancer Genetics Network (CGN) and the Susan G. Komen Breast Cancer Foundation (SGKBCF) regarding breast cancer genetics education. Funding was approved and work started in January 2002. Over the course of 2002, we developed and pretested the survey among all the five special population groups. Our final report was submitted on March 31, 2003 to the Susan G. Komen Breast Cancer Foundation. We are currently developing Phase 2 proposal materials and will contact potential sponsors of the next phase.

PI:

• Amelie G. Ramirez, DrPH, Professor of Medicine and Deputy Director of the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine

Co-PI:

• Kipling Gallion, MA, Assistant Professor of Medicine in Cancer Education at the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine

Funding Institution:

Susan G. Komen Breast Cancer Foundation

Funding Period:

1 year – 2002-2003

Location/Service Area:

Nationwide – Focus on African American, Appalachian, Asian American, Hispanic/Latino, Native American populations

Collaborators/Co-sponsors:

• Susan G. Komen Breast Cancer Foundation
• National Cancer Institute
• Center to Reduce Cancer Health Disparities
• Cancer Control and Population Sciences, Epidemiology and Genetics Research

Special Population Network Projects:

• Redes En Acción: The National Hispanic/Latino Cancer Network – Amelie G. Ramirez, Dr.PH, Baylor College of Medicine
• The Appalachia Cancer Network – Steven Wyatt, DMD, University of Kentucky at Lexington
• The Asian-American Network for Cancer Awareness, Research and Training-Moon Chen, Jr., PhD, University of California at Davis
• The National Black Leadership Initiative On Cancer Network Project – Louis Sullivan, MD, Howard University
• The American Indian/Alaska Native Leadership Initiative on Cancer – Judith Kauer, MD, Mayo Clinic Institute

Goals:

To develop a culturally sensitive set of surveys that assesses breast cancer genetics knowledge, attitudes and behaviors among women from five diverse ethnic groups: African Americans, Appalachians, Asian Americans, Hispanics/Latinos and Native Americans

Results:

The survey was developed by the Program Review Group (PRG), a committee of 15 individuals that included 2 representatives from each SPN, an epidemiologist, 2 evaluation specialists from NCI and representatives from the Komen Foundation. The survey has 5 sections: 1) breast cancer history; 2) breast cancer knowledge, attitudes, and behaviors; 3) genetic testing knowledge, attitudes and behaviors; 4) demographics; and 5) cultural issues. Pretesting involved 10 females (25-64 years of age) from each of the 5 SPNs who self-identified as members of that respective population. The group of 10 women included 3 high-risk women with breast cancer (family history of BC), 3 high-risk women without breast cancer, 2 low/moderate risk women with breast cancer (no significant family history of BC) and 2 low/moderate risk women without breast cancer. Pretesting focused on the survey’s readability, understandability, cultural sensitivity and appropriateness. Results indicated that the instrument took about 45-60 minutes to complete.

Potential Impact:

The study will likely yield a better understanding of the beliefs and attitudes with regard to breast cancer genetics issues from women of five ethnic/cultural minority groups (African American, Appalachian, Asian American, Hispanic/Latino, Native American).

Publications:

• Abstract to APHA 2003, other conferences.