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Cancer Control Research

Abstract

DESCRIPTION (provided by applicant): The long-term objective of this project is to foster enhanced risk communication and informed decision making among women at high risk for breast cancer and considering risk reduction. Specifically, this project will develop a computerized decision support tool that educates women about their risk factors and methods for risk reduction, and which includes an explicit value clarification exercise to aid them in weighing their preferences and concerns about the methods. Such a tool will aid them in making a shared decision with their health care provider regarding a personalized strategy for breast cancer risk reduction. In the long run, this tool may be integrated into a more comprehensive breast cancer decision support system, which includes a quantifiable benefit/risk index - based on their preferences and concerns for the outcomes. The program will be targeted to low-income, low-literacy, minority women through an urban public health program. Also, the program will use culturally, linguistically, and educationally appropriate media in order to make the information meaningful to the audience. The tool will be Internet based, but designed to play off-line during testing. The specific aims of the project are to 1) use qualitative methods with low-income, low-literacy minority women to explore their basic perceptions, conceptualizations and meanings of "risk" (related to invasive breast cancer), and explore their preferences, concerns, and decision making processes related to breast cancer risk reduction strategies, 2) create a computerized Decision Support Module to aid women in determining their personal risk of breast cancer and in weighing their preferences and concerns about various risk reduction strategies (i.e. mammography and clinical breast examination, chemoprevention, more aggressive approaches), with both educational and assessment components that can be tailored to user profile, and 3) conduct a process evaluation of the Decision Support Module implementation strategy and preliminary outcome assessment and refinement, in a clinical population of low-income and low-literacy minority women. As a result of this exploratory grant, we will plan a future formal evaluation of the Decision Support Module using a community primary carebased, randomized controlled trial, focusing on low-income and low-literacy minority women. In this subsequent project planned for the future, two intervention arms and one control arm will be included. The first intervention arm will include the full-computerized tool, with both the personal risk communication module and value clarification exercise. The second intervention arm will include only the personal risk communication module, and thus provide a direct evaluation of impact of a value clarification exercise on women's preferences for breast cancer prevention. We believe this will be a novel and important study, providing an approach to risk communication for breast cancer prevention that will be appropriate for use with low-income and low-literacy minority women facing this decision.