Lynch syndrome (LS), the most common hereditary colorectal cancer syndrome, also causes an increased risk for endometrial cancer and ovarian cancer. Depending on the Lynch syndrome gene (MLH1, MSH2, MSH6, PMS2, EPCAM), risks range from approximately 10% to 60% for endometrial cancer, and no increased risk to nearly 40% risk for ovarian cancer. Decision-making about risk-reducing surgery is complex and requires balancing age- and gene-specific cancer risks with family planning, as well as the medical and psychosocial implications of surgical menopause. Current uptake of risk-reducing gynecologic surgery for individuals with LS aligns poorly with clinical guidelines, as well as with gene- and age-associated risks for endometrial and ovarian cancer. Improved understanding of patient decision-making may improve the ability of care providers to council effectively in a shared decision-making model. To genuinely understand decision-making, however, also requires attention to the lifeworld and whole life-context of individuals with Lynch syndrome.
We performed a chart review of 106 LS patients to assess uptake of risk-reducing gynecologic surgery among individuals with different LS variants. Concurrently, we interviewed 20 patients with LS about their decision-making experiences, contextual factors related to decision-making, and decision-support needs. The interview guide and analysis of transcripts were informed by principles of human-centered design.
Patients shared the story of their LS diagnosis, described what it was like to decide for/against risk-reducing surgery, explained how they would respond if Lynch syndrome guidelines changed in the future, and shared ideas for decision-making support. The results of this study will serve as the first step in an iterative process to develop a tool to improve shared decision-making about risk-reducing gynecologic surgery for individuals with LS.
