Communication Between Japanese Patients With Hereditary Breast and Ovarian Cancer and Healthcare Providers on Sexual...

Risk-reducing bilateral salpingo-oophorectomy (RRBSO) is recommended for BRCA1/2 carriers to reduce ovarian cancer risk. Although RRBSO affects sex life, discussing this with healthcare professionals (HCPs) can be challenging. Moreover, research on this topic in Asia is limited.

This study aims to clarify HCPs' communication on RRBSO's impact on sex life and to consider the preferred communication methods of Japanese BRCA1/2 carriers and their partners.

A web survey was conducted with BRCA1/2 carriers and their partners using snowball sampling. Participants who agreed to the additional interview underwent interviews. Thematic analysis was performed on free-text responses and interview data. A pamphlet reflecting experiences with RRBSO was published after the survey, and feedback was obtained online.

Of the 50 surveyed participants, 10 underwent interviews. Three themes emerged: (1) hesitancy to ask questions about sex life, (2) the need to inform and support couples on their sex life after RRBSO, and (3) the unhelpfulness of receiving explanations from those who have not undergone RRBSO. Only 34.0% of participants received information on post-RRBSO sex life. Many expressed the need for themselves and their partners to receive information before RRBSO. The feedback survey revealed that digital pamphlets and paper were the preferred tools.

Providing couples with information about post-RRBSO sex life is essential. Additionally, cultural taboos hinder discussions on sex life leading to a preference for indirect sources of information. In Japan, some patients may face challenges in directly communicating with HCPs, highlighting the value of pamphlets and digital resources.