Development and Initial Testing of a Behavioral Intervention to Increase Pre-Test Genetic Counseling Among Families at Risk of Lynch Syndrome

Lynch syndrome (LS) is an inherited predisposition to cancer that substantially elevates lifetime risks for many cancers in both men and women. Identifying people with LS enables more frequent and earlier cancer screenings that can effectively reduce LS-related cancer morbidity and mortality. However, most Americans with LS are not identified. One cost-effective way to identify individuals with LS is by conducting genetic testing on blood relatives of patients diagnosed with LS, but their testing rate is low and blood relatives need more support in making a decision about whether to undergo testing. Pre-test genetic counseling provides critical information and addresses many of the barriers to testing. However, pre-test genetic counseling rate is low in this population and the barriers and facilitators have not been systematically studied. Although informational resources about pre-test genetic counseling exist, they are unlikely to be sufficient for behavior change. This project includes three aims to address these critical gaps: 1) Identify barriers and facilitators to pre-test genetic counseling among relatives with no history of cancer but at risk of LS; 2) Develop a behavioral intervention to increase pre-test genetic counseling uptake in this population; and 3) Evaluate and optimize feasibility of the trial methods and the behavioral intervention for a fully powered randomized controlled trial and explore the intervention’s preliminary efficacy. I will apply the Behavior Change Wheel, a well-established theoretical behavior change framework, to guide intervention development, and use mixed methods (i.e., focus group, usability testing, and a randomized clinical pilot trial). This project will yield an intervention that is ready for testing to evaluate its efficacy for increasing uptake of pre-test genetic counseling among relatives at risk for LS. It has the potential to make significant contributions to supporting informed testing decisions and increasing testing uptake, thereby promoting identification of LS and decreasing LS-associated morbidity and mortality. My study team consists of outstanding mentors who have recognized expertise in the methodologies and topic areas of the proposed research and a genetic counselor who will ensure that the research is clinically grounded. In coordination with my research activities, I proposed a career development plan with structured training and one-on-one mentoring to advance my knowledge and research skills in behavioral medicine and intervention development, clinical trials, qualitative methods, and grant management and writing. Along with abundant research and training resources as well as the supportive environment for transitioning early-career researchers to independence at Northwestern University Feinberg School of Medicine and Department of Medical Social Sciences, this K99/R00 will enable me to become an independent investigator to facilitate decision making in patients and other stakeholders who face difficult cancer-related decisions involving genetic risks.