Understanding risk perception and risk-reducing decision-making for surgery among individuals with a genetic...

Genetic predisposition to hereditary breast and ovarian cancer and Lynch syndrome increases the risk of developing cancer, including epithelial ovarian cancer (EOC). Depending on the pathogenic variant, (e.g., BRCA1 or PMS2) the risk of developing EOC ranges from approximately 3%-60%. To reduce this risk, many individuals are offered risk-reducing salpingo-oophorectomy (RRSO), a procedure in which fallopian tubes and ovaries are removed. Some centers have dedicated programs that provide targeted care for individuals at risk of gynecologic cancers, such as the Hereditary Gynecology Clinic in Winnipeg, Manitoba. To better understand how individuals across a spectrum of risk values for developing EOC interpret their personal risk and make decisions regarding RRSO, we conducted a convergent mixed-methods study involving an online survey and virtual interview. Sixty-three surveys and twenty interviews were completed. Participants viewed objective risk information as a starting point, to which 'experiential knowledge' and perceived control were applied and integrated into their personal subjective risk assessment. Perceived risk was intertwined with cancer worry, and individuals made decisions regarding RRSO based on factors such as perceived risk, control, family planning, hormonal impacts, and recovery. Importantly, healthcare providers exerted both direct and indirect influences on the decision-making process.