What do women at high risk of breast cancer request of a patient education day? Focus interviews with women before and after deciding about prophylactic interventions

Abstract

Objective: At a Danish Hospital, we wished to establish a co-designed patient education day about prophylactic interventions for women at high risk of developing breast cancer. However, knowledge is lacking on the women's acceptability and requests for content. The objective of this study is to gain knowledge about the acceptability and requests of the content of a patient education day among women at high risk of breast cancer considering prophylactic mastectomy.

Methods: A user panel consisting of patients and health care professionals developed an interview guide for two focus interviews with two groups of women at high risk of breast cancer; one group had received a prophylactic mastectomy and one group considered it. Thematic analysis was used to explore the participants' acceptability and requests for content.

Results: Meaningful content was knowledge about prophylactic interventions, how to share knowledge with partners and children, and talking to equals in a safe forum. Not all participants wished to discuss own surgery in a group setting.

Conclusion: An education day is an acceptable and supportive format for gaining knowledge about surgery, but since some topics may be vulnerable to discuss in a group setting to some women, we suggest the education day as a valuable supplement to the individual consultations.

Keywords: breast neoplasms; decision making; heredity; patient education as topic; prophylactic mastectomy; qualitative research.