A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy

This qualitative study sought to determine the information needs of high-risk pre-menopausal women who had undergone prophylactic bilateral oophorectomy to manage their inherited risk of ovarian cancer. In-depth interviews were carried out with 23 high-risk women following surgery. Although the benefit of risk reduction was perceived as out weighing the costs of surgery, many women reported that they would have liked more information about the physical and emotional after-effects of oophorectomy prior to and following surgery. The analysis identified five different types of information needed by women making surgical decisions, comprising information about ovarian function and the menopause, hormone replacement therapy (HRT), surgical procedures, convalescence and the risk of inheriting a genetic mutation and developing cancer. It is suggested that, in addition to genetic counselling for hereditary ovarian cancer, women should receive information about both the costs and benefits of prophylactic oophorectomy, and should have access to gynaecology nurse specialists both before and after surgery.