Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and Perspectives.

Purpose: By directly engaging with women diagnosed with ovarian cancer, this study aimed to explore and identify their view of the health symptoms and outcomes that matter most to them as they traverse their disease pathway.

Background: Patient-reported outcome measures in ovarian cancer have tended to focus on physical symptoms rather than the more complex psychosocial aspects of living with the disease. Using a "ground-up approach", this study sought to comprehensively understand the health concerns that matter most to women with ovarian cancer as a first step in generating items for development into an ovarian cancer-specific patient-reported outcome measure.

Patients and methods: Following an extensive literature review, we sought to capture the "patient voice" through a qualitative descriptive approach including a community conversation with ovarian cancer patients, their carers and clinicians, and interviews and focus groups with women with ovarian cancer. Thirteen women were interviewed individually, and two focus groups were conducted. A template thematic analysis was used to analyze the data.

Results: Key themes included challenges related to clinical diagnosis, treatment phase, altered relationships with family/friends, financial issues, relationships with health professionals and coping strategies. Within each key theme, several sub-themes emerged that were identified as various challenges experienced by participants. Diagnostic delay, chemotherapy and surgery-related challenges, negative impact of sexual well-being on partner relationship, communicational challenges with health professionals were among the few issues identified. In addition, self-empowerment was identified as a coping mechanism among participants.

Conclusion: By identifying priorities for women diagnosed with ovarian cancer we have highlighted the need for strategies to reduce diagnostic delays and improve quality of life for these women. Data will inform the development of an ovarian cancer-specific patient-reported outcome measure.