An exploratory qualitative study of women's perceptions of risk management options for familial ovarian cancer: implications for informed decision making

OBJECTIVE: Women who are at increased risk of familial ovarian cancer face complex decisions about strategies for managing their risk due to a lack of evidence regarding the benefits of ovarian cancer screening (OCS) and prophylactic surgery. At present, there is a limited understanding of women's attitudes towards these options. METHOD: In-depth interviews were conducted to explore perceptions of ovarian cancer screening and prophylactic oophorectomy (PO) in 10 women who were newly identified as being at increased risk of familial ovarian cancer. RESULTS: The study findings highlight the gaps in women's knowledge about risk management options. Although most women derived considerable reassurance from ovarian screening, many were not aware of the limitations of the screening process or the likelihood of receiving false positive results. Areas in which women's knowledge about prophylactic oophorectomy could be improved include the practicalities of surgery, the risks and benefits of HRT given postsurgically, the limitations of surgery in removing risk, and the absence of concrete information on which to base surgical decisions. In particular, women who were not previously aware of their increased risk may need additional psychological support and preparation. CONCLUSIONS: The present study raises serious questions about the extent to which women are making informed decisions about familial ovarian cancer risk management strategies. Suggestions are made for improving the information and support provided to women and for large-scale prospective research.