Novel Educational Material for Patients with a Variant of Uncertain Significance (VUS) in a Cancer Risk Gene

The number of individuals being tested for hereditary cancer syndromes has greatly increased in the last several years and many people receive Variants of Uncertain Significance (VUS) as a test result. Although VUS results should not guide medical management, patients and even some healthcare providers continue to use a VUS to alter or receive unnecessary medical care. We conducted a needs assessment via literature review and analyzed VUS patient interviews from a previous study with the goal of identifying various themes that could help determine content, layout, and messaging to incorporate into online educational materials. The needs assessment found few educational materials and identified the following themes: people may take inappropriate medical actions based on VUS results, people report feeling confused regarding their VUS result and how it is not helpful in determining medical management, rates of family sharing regarding genetic test results and family history of cancer remain low, people express concerns about sharing family history information, and advice from patients with a VUS regarding how to share test results and cancer risk information and why it is important. Using findings from the needs assessment we developed materials to educate patients about their VUS result, provide information about risks associated with a family history of cancer and prompt them to share cancer risk information with family members to promote cancer screening and prevention. Materials were evaluated using the CDC Clear Communication Index Score Sheet. This identified two areas in which to improve, including the number of main messages and numeracy. However, we determined that rather than one single main message we were comfortable with the materials reinforcing three main messages. Finally, we describe our ongoing process of collecting feedback from patients and healthcare providers that will be used to modify the materials before they are tested as part of a formal research study