Communicating breast cancer risk in a multi-ethnic low-numerate population

This study evaluated a breast cancer decision aid, RealRisks, which includes games of experience-based risk interfaces to communicate risk on breast cancer risk, genetic testing, and chemoprevention, particularly in low-numerate women. Four focus groups (N=34) were conducted in Upper Manhattan in New York City. We applied a mixed methods approach to analyze a quantitative survey and qualitative transcripts. Paired t-test and McNemar’s test were used to compare within-individual changes in accuracy of perceived breast cancer risk. For the qualitative approach, a content analysis was conducted using Atlas.ti software. The Scott’s Pi value for the inter-rater reliability was 0.7374. After interacting with RealRisks, the difference in perceived and actual breast cancer risks significantly improved for 5-year risk (p=0.008), but not for lifetime risks (p=0.20). Even in the subgroup of women with low numeracy, accurate risk perceptions improved from 45% to 70%. In the qualitative analysis, desire for personalization, information need, and autonomy related to healthcare emerged as crucial themes.  In conclusion, this study demonstrated a significant improvement in accuracy of perceived breast cancer risk after exposure to RealRisks in a multi-ethnic low-numerate population. In addition, the results from the narratives implied that participants are willing to actively take part in shared decision making. Based upon feedback from our focus groups, we were able to identify information needed to fully represent the important issues of breast cancer risk to further develop our prototype for testing in a randomized controlled trial.