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Development of a survey to assess knowledge, attitudes, and interest in genetic testing among five diverse ethnic groups

Amelie G. Ramirez, DrPH, Fabiola E. Aparicio-Ting, MPH, Sandra L. San Miguel de Majors, MS, and Kipling Gallion, MA. Dept. of Medicine, Baylor College of Medicine, 8207 Callaghan Rd., Suite 110, San Antonio, TX 78230, 210 348 0255, aramirez@bcm.tmc.edu

Purpose: The NCI's Special Populations Networks (SPN), Cancer Genetics Network, and the Komen Foundation formed a unique partnership with Baylor College of Medicine to design a culturally sensitive survey instrument to assess breast cancer genetics knowledge, attitudes, and behaviors among women of five ethnic groups. Methods: A Progress Review Group (PRG) including representatives and genetics experts from each SPN (African American, Appalachian, Asian American, Latino, and Native American), an epidemiologist, and NCI representatives was assembled. The PRG oversaw a literature review and survey development. The instrument was pretested among the five populations with a total of 48 women. Results: An interpersonal instrument was developed using items validated in the Caucasian population, modified to reading level and understandability appropriate for the target groups. The instrument includes an assessment of breast cancer and genetic testing knowledge, attitudes and behaviors, appropriate for all groups, and a culture-specific section for each group. Pretesting revealed it was lengthy and the reading level high. The instrument was shortened to 45 minutes and revised to decrease the reading level. Pretesting data is being analyzed; results will be presented. Conclusions: The instrument developed is the first of its kind and is one of the first times that such diverse populations collaborated on research of this nature. This project could provide a relationship between genetics and the environment of five diverse populations. The next step is to implement the instrument nationally and collect data to design culturally sensitive breast cancer genetics education programs for these five ethnic groups.

Learning Objectives:

Keywords: Breast Cancer, Special Populations

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

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The 132nd Annual Meeting (November 6-10, 2004) of APHA