Background

Women with genetic mutations including BRCA1, BRCA2 and Lynch syndrome are at increased risk of developing gynaecological cancers with management options including surveillance and/or risk reduction surgery. Little is known about the information women require to inform their decisions around having risk reduction surgery, the implication this surgery has for them and the timing preferences to receive this information.

Aims

To identify the information needs of women who are considering or who have had risk reduction surgery due to having a diagnosed or suspected genetic mutation with subsequent increased risk of developing gynaecological cancer.

Materials and Methods

A pilot survey was undertaken in a tertiary, metropolitan hospital as part of a service improvement project. Women referred to the gynaecology-oncology service for gynaecological risk reduction surgery between January to December 2018 were invited to participate through completing either online or hard copy versions of a 12-item survey.

Results

A response rate of 60% (n = 32) was obtained from women between 27 and 77 years of age. Key information topics included sexuality and intimacy (90.6%; n = 29), the surgery itself (87.5%; n = 28) and surgical menopause (87.5%; n = 28). Over 90% (n = 31) of respondents stated they preferred to receive information about surgery pre-operatively and in written format (81.3%; n = 26). The importance of a multidisciplinary approach was recognised with women wanting information from allied health practitioners such as physiotherapists and social workers.

Conclusions

Findings have enabled a better understanding of the type, timing and content of information desired by women making complex decisions about risk reduction surgery. Results have contributed to developing an information resource which will more adequately assist women to meet their information needs when considering gynaecological risk reduction surgery in our hospital.