Objective: To describe the perspectives of Canadian women living with ovarian cancer regarding their experiences with the disease.
Design: A cross-sectional survey of a convenience sample of Canadian women with ovarian cancer.
Setting: Survey questionnaires were sent to physicians in 26 cancer programs that treat women with ovarian cancer and to ovarian cancer self-help groups for subsequent distribution to women.
Participants: Women diagnosed with ovarian cancer and able to read English or French.
Main outcome measures: A variety of individual items in the survey related to information received, communication, physical and psychosocial symptoms, impact of illness and quality of life.
Results: A total of 315 women returned the survey. The average age of the respondents is 59 years. Each province and territory is represented in the sample. Over one-half of the women received a diagnosis of ovarian cancer within a month of seeking help for a concern and 85% had multiple treatment modalities. The majority of the women felt adequately informed (80%) and were satisfied with communication with their physicians (mean of 4.1 to 4.5 on a 5-point scale). A majority (62%) said that their lifestyle had changed as a result of their disease. Problems were experienced most frequently regarding side effects (58%), fear of recurrence (54%), sleeping difficulties (46%), bowel difficulties (44%), fear of dying (36%) and difficulty concentrating (32%). Many who experienced problems reported receiving inadequate help for them (16% to 49%). Quality of life was reported as significantly lower following the diagnosis and treatment of ovarian cancer (p = 0.0001).
Conclusion: This study provides an important foundation for further investigation. There is a pressing need for research regarding the early identification of ovarian cancer and issues of support and coping. Care for women with ovarian cancer requires the expertise of a range of disciplines and community-based agencies working collaboratively as a team.