Assessing Information Management for Breast Cancer Prevention & Risk Reduction: Applying an Integrated Theory of Information Management for Younger Women

Background: While breast cancer typically affects older women, younger women – particularly those with family history – are still at risk. Prevention/screening policy recommendations for women <50 are non-prescriptive and put the onus on the individual to make an informed decision. How younger women manage information related to their risk reduction options, and whether this is dependent upon family history status, is not understood.

Objective: The objective of this project is to understand the cognitive precursors that ultimately affect breast cancer risk information management (seeking or avoiding information). This study tests a theoretical model combining the Risk Perception Attitude Framework and the Theory of Motivated Information Management to assess how/why women move from initial breast cancer risk perceptions to the ultimate decision to seek or avoid information.

Methods: A cross-sectional survey was fielded in September 2013. Via network sampling procedures, 940 women ages 18-49 years who have never been diagnosed with breast cancer participated in this web-based survey.

Results: Outcome measures include risk perception, self-efficacy, uncertainty, emotions, and information management. Preliminary results indicate that 68% of respondents feel breast cancer has at least some impact on their lives. Approximately 40% of respondents report having at least one second degree relative and nearly 12% report having at least one first degree relative with breast cancer; 2.4% report having a relative diagnosed with both breast and ovarian cancers, an indicator of the BRCA genetic mutation. Sixty-two percent of women felt uncertain about knowing their risk reduction options; this uncertainty elicited a variety of emotions including feeling motivated (46%) and anxious (30%). The data shows that a practical incongruence exists: more than 61% of respondents have never sought information from their provider, but 68% feel it is important to talk with their provider about breast cancer risk reduction options. Over half of respondents reported intentions to talk with their provider about breast cancer risk reduction in the next few months.

Conclusions: It is necessary to test causal models predicting when/why women seek out breast cancer information to better understand what type and amount of information women need to accurately perceive risk, overcome uncertainty, and make informed decisions with regard to interpreting breast cancer preventive policies and recommendations for choosing appropriate risk reduction behaviors. Understanding the information management process can have a profound effect on the interpretation of clinical guidelines and risk communication practices put in place by providers for younger women deemed high risk for breast cancer.