Interactive CD-ROM on Cancer Genetics for Hispanics

Background: There is a growing awareness of family history as a risk factor for disease and the availability of genetic testing for inherited cancers continues to increase. However, effective, efficient resources for educating individuals about inherited cancer risk are lacking, especially in geographic areas that are underserved by genetics services. In particular, there is a dearth of educational resources for Hispanics on cancer genetics that are both culturally relevant and available in Spanish. The broad, long-term objective is to improve Hispanic women's understanding about breast cancer risk by demonstrating the effectiveness of an interactive computer program as an effective and sustainable educational resource.

Aims: We propose to first modify and adapt an effective, interactive computer-based program, "Breast Cancer Risk and Genetic Testing," to be culturally and linguistically appropriate for Hispanic. Second, we propose to conduct a randomized, controlled evaluation of the modified computer program when used alone vs. when guided by a trained promotora, or lay health worker.

Methods: Qualitative methods will be used to identify changes and modifications to the current computer program to make it more culturally relevant. The modified program will be created in both English and Spanish. Focus groups consisting of Hispanic women with a prior history of breast cancer as well as those with a family history of the disease will be conducted, along with key informant interviews and expert panel reviews. Following the modification and adaptation of the program for a Hispanic audience, we will recruit women from a community-based health organization for participation in a randomized trial to evaluate the effectiveness of the program. Women will be randomized to use the program under the guidance of a trained lay health worker, or promotora, or to use the program unassisted. Main outcomes, including knowledge, perceived risk, decisional satisfaction, use of health care services, and satisfaction with the intervention, will be measured immediately following the intervention, and at 1 and 6 months post-intervention.

Relevance: Effective, efficient resources for educating individuals about inherited cancer risk are lacking, especially in geographic areas that are underserved by genetics services. In particular, there is a dearth of educational resources for Hispanics on cancer genetics that are both culturally relevant and available in Spanish. This study will use an innovative application of two effective and acceptable health education and health promotion methods to address the needs of Hispanic women living in a geographic area that is underserved in terms of genetics services. In doing so, we will address an important educational void by providing the information women need in a manner that is satisfying, acceptable and effective.