Initial findings on the development of a valid and reliable symptoms questionnaire for use in a prospective study of ovarian cancer symptoms.

Research indicates that women with ovarian cancer experience an average of three to nine symptoms in the pre-diagnosis period and that approximately one fifth have symptoms for six months or longer before consulting their doctor. The most common symptoms in the literature are abdominal or pelvic pain, bloating, increased abdominal size, fatigue, urinary, gastrointestinal and bowel symptoms. However, these findings are based upon retrospective research that used non-validated tools. Aims The study aim is to prospectively assess symptoms in a cohort of post-menopausal women and correlate with development of ovarian cancer on follow-up. The aim of the initial phase is to develop a valid and reliable symptoms questionnaire according to European Organisation for Research and Treatment of Cancer guidelines. Method Phase I literature review generated a list of 87 potentially relevant symptoms. Phase II involved 21 health professional interviews, analysis of symptoms reported by 188 women in a patient support group survey and 25 telephone interviews with ovarian cancer patients. Data was triangulated to ensure the symptoms list was accurate and comprehensive. Results Health professionals ranked abdominal bloating, increased abdominal size, generally feeling unwell, abdominal discomfort and passing urine frequently as the most relevant symptoms of ovarian cancer. Survey and telephone interview participants identified similar symptoms to health professionals, although there was some difference in the rankings of symptoms. The symptoms list was revised according to feedback from each group, resulting in a final list of 31 items Conclusion The symptoms identified by each group were largely comparable although in contrast to health professionals, women did not consider ‘generally feeling unwell’ as particularly relevant. The study is ongoing with the next phase involving pre-testing and field-testing of the symptoms questionnaire