Samuel George Oxley, Milly Lake, Amanda Dibden, Tia Whenham, Xia Wei, Lea Mansour, Ashwin Kalra, Subhasheenee Ganesan, Jacqueline Sia, Michail Sideris, Caitlin Fierheller, Margarida Kurzer, Rachel Perfect-Lake, Jyotsna Pundir, Ruth Armstrong, Janos Balega, Ishita Bhatnagar, Michela Cicchetti, Cecilia Compton, Jacqueline Cook, Rosemarie Davidson, Lesa Dawson, Sadaf Ghaem-Maghami, Helen Hanson, Rachel Harrison, Rachel Hart, Alison Kraus, Fiona Lalloo, D Gareth Evans, Terri P McVeigh, Kevin Monahan, Laura Monje-Garcia, Esther Moss, Alex Murray, Kai Ren Ong, Myfanwy Rawson, Dimitra Repana, Adam N Rosenthal, Neil Ryan, Lyndall Sarkies, Saba Sharif, Lucy Side, Kate Simon, Tracy Smith, Joyce Solomons, Vishakha Tripathi, Amy Watford, Mark Willett, Adam Brentnall, Rosa Legood, Ranjit Manchanda, PRESCORES study team
Health-related quality-of-life in women with Lynch Syndrome is likely to be lower following RRH in younger, pre-menopausal women. This is relevant for counselling, RRH decision making, and economic evaluations of women with Lynch Syndrome, with increased endometrial cancer risk.
BACKGROUND: Understanding the impact of risk-reducing hysterectomy (RRH) on health-related quality-of-life is essential for informed decision-making around endometrial cancer prevention and has not been previously investigated. This study aimed to estimate health-related utilities in women who received RRH.
METHODS: PRESCORES was a multicentre cross-sectional study (ISRCTN17432105). We invited 4031 UK women ≥18 years with confirmed Lynch Syndrome, without prior gynaecological cancer, to participate between May 2023 and November 2024. The main outcome was a complete-case adjusted mean-difference in EQ-5D utility scores between participants who had undergone RRH or not, and by pre/post-menopausal age groups. Quality-of-life was measured at the time of survey completion, and retrospectively 4 months after surgery in the RRH-group. The Cancer-Worry Scale instrument was also evaluated by RRH group. Sensitivity analysis considered alternative statistical methods, multiple imputation, and restricting analysis to people 35-80 years.
FINDINGS: Analysis included 1120 participants: 529 had undergone RRH with a median age of 55 years (IQR 48-62), compared with 39 years (33-52) without RRH. The RRH-group was significantly more likely to have had cancer, physical co-morbidities, be parous and used aspirin. Adjusted mean utilities were slightly lower in the RRH than no-RRH group (difference -0.020, 95% CI -0.045 to 0.004; p = 0.11), much lower for premenopausal women (-0.041, -0.074 to -0.008), but similar for postmenopausal women (0.003, -0.036 to 0.042). Cancer-Worry-Scale scores were lower in the RRH group (mean-difference 0.48, 95% CI -0.807 to -0.157; p = 0.0037). Interpretation was robust to sensitivity analyses.
INTERPRETATION: Health-related quality-of-life in women with Lynch Syndrome is likely to be lower following RRH in younger, pre-menopausal women. This is relevant for counselling, RRH decision making, and economic evaluations of women with Lynch Syndrome, with increased endometrial cancer risk.
FUNDING: Rosetrees Trust (CF1\100001) and Barts Charity (G-002286 and MRC0167).