Women at risk of ovarian cancer: attitudes towards and expectations of the familial ovarian cancer clinic.

Familial ovarian cancer clinics are a recent development and little is known about the characteristics of women who attend. One hundred and ninety-seven women with a family history of ovarian cancer completed a questionnaire prior to their initial attendance at the Familial Ovarian Cancer Clinic in Edinburgh. Issues relating to screening procedures were the most commonly cited barriers to attendance, with a proportion finding gynaecological examination embarrassing (17.0%) or uncomfortable (18.0%). Expectations of the clinic were high in terms of access to resources and information. The vast majority of women would prefer to have regular screening (94.7%) and genetic testing (93.2%) if it were available. Attitudes to prophylactic surgery and chemoprevention were more diverse, but would be considered by 54.3% and 43.9% of respondents respectively. Although the current screening procedure for ovarian cancer is of unproven efficacy, a high proportion of women believed in its ability to reduce mortality (77.9%) and to detect tumours at an early stage (65.8%). There was a trend for women to believe this more strongly at follow-up. This study highlights the need to make women more aware of the limitations of current ovarian cancer screening techniques, particularly where the alternative management strategy of prophylactic surgery might otherwise be dismissed.