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

Abstract

AbstractIntroductionA breast cancer risk assessment tool using Polygenic Risk Score (PRS) of 313 single nucleotide polymorphisms and a risk prediction algorithm from the Gail Model had been established and validated for Asian populations. However, effective ways for delivering personalized risk information have not been fully explored yet. 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.MethodsWe conducted ten focus group discussions between July and October 2022 with thirty-two Asian women above the age of 25. The discussions aimed 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.ResultsParticipants indicated a preference for a comprehensive report that included follow-up steps and information for managing their breast cancer risk. Additionally, they highlighted the need for visuals without colors that project intimidation as well as a summary on the first page of the report to support interpretations. In the context of the report’s content, participants preferred personalized recommendations for risk reduction, and communication styles could be enhanced through the use of simplified language. Furthermore, we found out that Singaporeans receiving low-risk results were less likely to seek additional physician follow-ups compared to Indonesians, due to their greater breast cancer prevention awareness. Finally, participants found the report useful and would like to see similar reports on other diseases in the future.ConclusionOverall, most patients prefer a test report to strike a balance between content and complexity. The study also highlighted the importance of the psychological impact of patients receiving their test reports, which is greatly influenced by the patients’ degree of understanding and interpretation of the reports. Lastly, 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.