Exploring the informational needs and use of information by patients undergoing risk-reducing breast surgery: a qualitative study

Women with a pathogenic variant in a breast cancer susceptibility gene undergoing a risk-reducing mastectomy have poorly understood informational needs. Information contributes to individuals achieving their full health potential and is essential in informed decision-making. Whilst many women are satisfied with their decision to have risk-reducing surgery, some will experience regret. Informed decision-making may be important in reducing any associated psychological harm. This study aimed to explore satisfaction with information accessed by patients regarding their risk-reducing mastectomy and better understand their informational needs for risk-reducing surgery decision-making Semi-structured interviews were conducted pre- and post-operatively with 22 women undergoing risk-reducing mastectomies for BRCA1/2 pathogenic variants with no breast cancer history at the Nottingham Breast Institute. Inductive thematic analysis was conducted. Four themes were constructed: Sources of information, Informational needs, Uses of information and Impacts of information. A broad spectrum of information sources were used with an apparent hierarchy. Information from clinicians and lived experiences were preferred to written and online sources. Some participants felt their informational needs were met, others found the information contradictory, cancer-focused and jargon filled. Participants required information early enough to be useful. Informational needs differed between individuals which affected the desired format. Participants informational needs were distinct from women with breast cancer undergoing a mastectomy. Encouraging active and informed decision-making could be important to reduce regret and the associated psychological harm some women experience following a risk-reducing mastectomy. This research offers insights into the informational needs of this distinct cohort and recommendations will guide patient information development.