How do women experience a change in their clinically-derived breast cancer risk estimates: views from a UK family history risk and prevention clinic

TL;DR

This study explores how women in the UK perceive and react to changes in their breast cancer risk estimates after incorporating new risk factors like breast density and polygenic risk scores.

Contribution

The study provides novel insights into how women experience and interpret updated breast cancer risk estimates in a clinical setting.

Findings

Women believed their risk estimates would remain unchanged due to family history, but received either increased or decreased risk estimates.

Participants trusted the clinic as a reliable source of information and valued the new risk factor knowledge.

Women processed the implications of updated risk estimates, with positive reactions despite changes in preventative management.

Abstract

Introducing breast density and polygenic risk scores into breast cancer prediction models results in greater precision and can involve alterations to previously communicated risk estimates and preventative management. This study explored how women from a UK family history risk and prevention clinic view, experience and understand a change in their communicated risk.

Twenty-two women were interviewed; 11 received an increased risk and 11 a decreased risk. Data were analysed using reflexive thematic analysis.

Four themes were generated: (i) unaware of possibility of risk change, illustrating women believed their risk estimates would remain unaltered due to their family history, hence receiving a lower risk was shocking but a relief, but an increased risk somewhat unsurprising, (ii) a trusted source influences adapted risk appraisals, highlighting the clinic’s reputation as an information source, as well as personal connections with the service effecting risk appraisals, (iii) perceived value of new risk factor knowledge, where women contemplated the usefulness of knowing their breast density and polygenic risk scores, (iv) heart versus head: changes in preventative management, where the implications of an updated risk estimate was processed.

Women reacted positively to their updated breast cancer risk estimates and trusted the information provided, even when preventative management options changed.

The online version contains supplementary material available at 10.1186/s12885-026-15651-w.