PROJECT SUMMARY
Lynch syndrome (LS) is an inherited cancer predisposition syndrome that substantially elevates lifetime risks for
multiple cancers in both men and women. Identifying people with LS enables more frequent and earlier cancer
surveillance and prevention, which can effectively reduce LS-related cancer morbidity and mortality. However,
most people with LS in the United States are not diagnosed. One cost-effective way to identify individuals with
LS is by conducting genetic testing on blood relatives of patients diagnosed with LS (or “cascade testing”), but
the testing rate is low. Pre-test genetic counseling is a promising means to address many of the barriers to testing
and to increase testing uptake. However, pre-test genetic counseling uptake is low in relatives at risk of LS, and
the barriers and facilitators have not been systematically studied. Although informational resources for LS genetic
counseling exist, they are unlikely to be sufficient for motivating behavior change. Aligned with the National
Cancer Institute’s focus on cancer research to advance scientific knowledge and help all people live longer,
healthier lives, the proposed research will address these critical gaps through three aims: 1) Identify barriers and
facilitators to pre-test genetic counseling among relatives with no personal history of cancer but at risk of LS; 2)
Develop a theory-based 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 to prepare for a fully
powered randomized controlled trial and explore the intervention’s preliminary efficacy. I will apply the Behavior
Change Wheel, a well-established behavior change framework, and use mixed methods (i.e., focus groups,
usability testing, and a randomized controlled pilot trial) to develop a behavioral intervention to increase pre-test
genetic counseling uptake. The proposed research will lead to an R01 proposal to test the efficacy of the
intervention. 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, my career development plan includes
structured training and one-on-one mentoring in behavioral medicine and intervention design and development,
design and conduct of clinical trials, qualitative methods, and grant writing and management. Along with the
abundant research and training resources and 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 working to facilitate
decision making in patients and other stakeholders who face difficult cancer-related decisions, including those
involving genetic risks.