What do women want to see in a personalized breast cancer risk report? A qualitative study of Asian women of two countries

Abstract

Introduction: A breast cancer risk assessment tool using Polygenic Risk Score (PRS) assessment of 313 single nucleotide polymorphisms and a risk prediction algorithm from the Gail Model had been established and validated for Asian population. Through facilitated focus group discussions, we assessed the preferences of women from two Asian countries regarding the presentation of risk results, the level of detail provided for explanations, and recommendations for follow-up actions. Methods: This qualitative study was conducted between July to October 2022 with Asian women above the age of 25. We structured a focus group discussion to evaluate the views and perceptions of women in Indonesia and Singapore in relation to personalized breast cancer risk assessment. All participants received either a detailed high-risk or low-risk mock report and were assigned to either high-risk result or low-risk result focus group based on the report they had randomly received. All focus group discussion content was then thematically analyzed. Results: In Singapore, participants preferred a detailed report as it was comprehensive and provided follow-up steps and information to manage their breast cancer risk. Participants raised the need for visuals without colors that project intimidation as well as a summary on the first page of the report to support interpretations. Regarding content, participants expected recommended actions to reduce their risk. Communication styles could also be improved with simplified language. Furthermore, we identified anxious responses from participants receiving high-risk results and relieved responses from those receiving low-risk results. Overall, participants found the report useful and would like to see similar reports on other diseases in the future. Conclusion: Overall, most patients prefer a test report to be well balanced between content and complexity. The study also highlighted the importance of psychological impact of patients receiving their test reports, which is greatly influenced by the patients' degree of understanding and interpretation of the reports. Finally, as most patients would likely increase their engagement with their physicians upon receiving their test results, future studies could be extended to physicians who are directly involved in the patient care delivery of breast cancer prevention.