Baseline self-perceived risks and risk-reducing behaviors in Lynch syndrome patients undergoing annual surveillance versus risk-reducing surgery (449)

Abstract

<b>Objectives:</b> There is a paucity of data regarding self-perceived risks of cancer and attitudes toward potential risk-reducing strategies in patients diagnosed with Lynch Syndrome (LS). The objective of the study was to describe self-perceived risk and knowledge of riskreducing behaviors in LS patients and determine differences in those undergoing risk-reducing surgery (RRS) versus annual surveillance. <b>Methods:</b> This prospective cohort study enrolled patients diagnosed with LS based on pathogenic variants in mismatch repair genes but unaffected by gynecologic cancer from February 2015 to January 2021. Participants completed questionnaires evaluating attitudes and behaviors related to cancer screening and self-perceived cancer risk. Patients in both RRS and surveillance completed these questionnaires at baseline, three months, and one year. We hereby report responses to the questionnaires at baseline. Statistical analysis was done by reporting proportions and Chi-square for significance. <b>Results:</b> During the study period, 81 patients were enrolled; 41 elected to undergo RRS, and 40 underwent annual surveillance. Patients in the RRS group were significantly older (46 vs 32 years, p<0.001). The most common LS-associated mutation was <i>MSH6</i> (34.6%). There was no significant difference in risk perception between groups. Most patients (94.7%) perceived themselves to be at "somewhat to much higher" risk of endometrial cancer than women their age, and most (44.7%) cited this risk between 33-61%. Most (93.4%) perceive their risk of ovarian cancer to be "somewhat to much higher" than the general population; a majority (36%) rated their risk of ovarian cancer to be between 13-61%. Patients in the surveillance group were more likely to be aware of risk-reducing steps (89.7% vs 58.6, p=0.007), and 42.9% rated these strategies as very or extremely effective. The most common risk-reducing behavior was mindfulness of abnormal symptoms, such as bleeding (97.1%). Prior to enrollment, a significant proportion reported engagement in cancer surveillance (51.4% ultrasound and 39% endometrial biopsy). The most common symptom worrisome to pre-menopausal patients was vaginal bleeding with clots (37.3%), and the majority (85%) would seek help either immediately or in case of no resolution within four weeks. Over half of patients (51.7%) were very or extremely concerned about abdominal pain, and 76.7% were likely to seek help if the pain didn't resolve immediately or within four weeks. The majority of patients were "somewhat to completely reassured" with a normal CA-125 (72.4%), transvaginal ultrasound (74.9%), and endometrial biopsy (72.4%). <b>Conclusions:</b> Patients with LS appropriately considered their risk of endometrial/ovarian cancer higher than the general population and were likely to engage in perceived risk-reducing behaviors, even prior to their enrollment into the program. Normal surveillance tests may create false reassurance and may be addressed by increased counseling regarding limitations of gynecologic cancer screening in LS.