What would the experts do? Genetic testing, surveillance, and risk-reduction preferences for BRCA and Lynch syndrome.

Abstract

e12542 Background: Extensive data and national guidelines are now available regarding surveillance and risk reduction options for BRCA and Lynch syndrome mutation carriers. However, most of these options are presented as choices to patients who will often ask their providers, “What would you do?” We surveyed providers from multiple specialties to learn what they would do if at 50% risk to carry a BRCA or Lynch syndrome mutation. Methods: In July of 2012 we surveyed providers from multiple specialties via internet- based surveys. Participants were obtained through the American Medical Association and the National Society of Genetic Counselors. All responses were anonymized. Results: 1,313 specialists completed the online questionnaire. Those providers who commonly treat breast, ovarian, colon and uterine cancers were grouped and compared to providers who are less likely to be the treating specialist. We found statistically significant differences in the percentage of cancer genetics specialists who would pursue BRCA and Lynch syndrome testing compared with providers in other specialties (p=0.000, 0.007, respectively). We found statistically significant differences in the percentage of providers who treat breast or ovarian cancer that would opt for prophylactic bilateral mastectomy or prophylactic oophorectomy if BRCA+ (p=0.000, p=0.004, respectively) compared to other providers. We found statistically significant differences in the percentage of providers who treat colon or uterine cancer that would have their colon or uterus removed if found to carry a Lynch syndrome mutation (p=0.000, p=0.04, respectively) compared to other specialists. Conclusions: Providers’ specialties and, possibly, disease-specific exposure to surveillance and treatment regimens impacted their personal choices with respect to cancer genetic testing, surveillance and prophylactic surgeries for BRCA and Lynch syndrome.