Human-centered design and decision-making around risk-reducing gynecologic surgery: Understanding the lifeworld of individuals with Lynch syndrome
Saturday, October 14, 2023
9:00 AM – 10:15 AM ET
Location: Galena (Fourth Floor)
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 personal values and priorities around cancer risk mitigation versus implications of surgical menopause for increased morbidity, mortality, and decreased quality of life. Current uptake of risk-reducing gynecologic surgery for individuals with Lynch Syndrome 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 increase 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 conducted semi-structured interviews with individuals who received a Lynch syndrome result from a population genetics screening program or from usual-care cancer genetics clinic. Patients shared the story of their diagnosis, discussed balancing childbearing plans with cancer risk reduction, and described how they would respond if Lynch syndrome guidelines about surgery changed in the future. This presentation summarizes basic principles of human-centered design and explains how this study’s exploration of the lifeworld of individuals with Lynch syndrome forms the first step in an iterative process to develop a creative tool to improve shared decision-making.