The co-development of personalised 10-year breast cancer risk communications: a ‘think-aloud’ study

BACKGROUND: Risk stratified breast cancer screening is being considered as a means of improving the balance of benefits and harms of mammography. Stratified screening requires the communication of risk estimates. We aimed to co-develop personalised 10-year breast cancer risk communications for women attending routine mammography. METHODS: We conducted think-aloud interviews on prototype breast cancer risk letters and accompanying information leaflets with women receiving breast screening through the UK National Breast Screening Programme. Risk information was redesigned following feedback from 55 women in three iterations. A deductive thematic analysis of participants’ speech is presented. RESULTS: Overall, participants appreciated receiving their breast cancer risk. Their comments focused on positive framing and presentation of the risk estimate, a desire for detail on the contribution of individual risk factors to overall risk and effective risk management strategies, and clearly signposted support pathways. CONCLUSION: Provision of breast cancer risk information should strive to be personal, understandable and meaningful. Risk information should be continually refined to reflect developments in risk management. Receipt of risk via letter is welcomed but concerns remain around the acceptability of informing women at higher risk in this way, highlighting a need for co-development of risk dissemination and support pathways. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12885-022-10347-3.