Inclusion criteria, exclusion criteria and study summary
This research aims to determine the quality-of-life (healthcare-related utility scores) following surgery to remove the womb (hysterectomy) to prevent endometrial cancer. We will use this information to build a model to determine the level of lifetime risk of endometrial cancer at which this preventive surgery is cost-effective. Finally, we will assess the acceptability of offering preventive hysterectomy to general population women at or around these risk thresholds determined. Part 1 is a cross-sectional cohort survey study of women with Lynch Syndrome, who are at increased cancer risk. This consists of a questionnaire and quality-of-life survey. This will determine the quality-of-life of women who have/ have not had preventive hysterectomy. It is expected that almost all women with Lynch Syndrome who had preventive hysterectomy will also have had their ovaries removed. Part 2 is a vignette-based study. This is designed to generate one or more vignettes which represent a woman who has not yet gone through the menopause, who is at increased risk of endometrial cancer. The woman described has preventive hysterectomy without removal of the ovaries. The quality-of-life of those described in vignettes will then be valued by participants. The development process follows methodological recommendations from NICE. Once utility scores for hysterectomy are known, a health-economic model will be developed, to determine the lifetime risk threshold of endometrial cancer at which preventive hysterectomy should be offered. Part 3 is an experimental survey study, designed to evaluate the prospective acceptability of hysterectomy and other prevention strategies. Acceptability will be tested at varying levels of lifetime endometrial cancer risk, as determined by modelling. All participants will only complete one survey at one time point only. This study has the potential to influence clinical practice for women at increased risk of endometrial cancer.
