Article Text
Abstract
Introduction/Background PROTECTOR (ISRCTN25173360) evaluates outcomes of pre-menopausal women at increased ovarian cancer(OC) risk, who choose risk-reducing early-salpingectomy (RRES) and delayed-oophorectomy (DO), salpingo-oophorectomy (RRSO), or no surgery. No qualitative study has explored quality-of-life and satisfaction after RRESDO. This study aims to explore satisfaction, experiences and outcomes of risk-reducing surgery on health and wellbeing.
Methodology Qualitative sub-study within PROTECTOR.
We conducted in-depth semi-structured 1:1 telephone interviews after RRES/DO/RRSO, until sufficient information power reached. All interviews were audio-recorded, transcribed, and analysed using applied thematic analysis. Data was managed using NVIVO-v12.
Results We interviewed 28 participants following surgery: 8 RRSO, 10 RRES, 10 DO, including 4 with serous tubal intraepithelial carcinoma (STIC) and 2 with incidental OC on histology. Median age was 42 years, and median follow-up 32 months. 6 themes were interpreted: 1) Impact of initial decision-making, 2) Menopause, 3) Cancer worry, 4) Considerations between RRES and DO, 5) Attitudes to fertility, 6) Health outlook. There was high satisfaction and low decision-regret after risk-reducing surgery. Participants greatly valued the option of RRESDO, this enabled earlier access to risk-reducing surgery for some, and those with STIC/OC were especially grateful for their initial surgery, feeling that RRES saved their life. Patients with STIC have cancer worry and concerns which are not currently addressed. The decision for DO is more complex than RRES, influenced by cancer worry and menopause issues, and regular follow-up is valued. There was huge variation in counselling and treatment of menopause, which greatly affected quality-of-life.
Conclusion This study provides valuable insights not previously reported after RRESDO and STIC, which have service implications. Participants are highly satisfied with their decision for risk-reducing surgery, however after RRES they value regular follow-up to enable planning of DO. Participants strongly prefer specialist advice and management of menopause. Those diagnosed with STIC experience increased cancer worry and desire further follow-up.
Disclosures The PROTECTOR trial is supported by the Rosetrees Trust and Barts Charity.