Need: There is a need to determine Texans that would benefit from genetic counseling and testing as outlined in the 2018 Texas Cancer Plan. Overall, 76,600 Texans are projected to be mutation carriers for Hereditary Breast and Ovarian Cancer Syndrome (HBOC) or Lynch Syndrome (LS), the two most common hereditary cancer conditions with Tier 1 designation. Over half of these individuals have or will develop cancer. In screening the mammography patients for HBOC, we reported that 60% of underserved and 33% of insured patients identified had a prior diagnosis of breast cancer but no testing offered before diagnosis. This population represents a distinct opportunity to reduce cancer incidence, as ...

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Need: There is a need to determine Texans that would benefit from genetic counseling and testing as outlined in the 2018 Texas Cancer Plan. Overall, 76,600 Texans are projected to be mutation carriers for Hereditary Breast and Ovarian Cancer Syndrome (HBOC) or Lynch Syndrome (LS), the two most common hereditary cancer conditions with Tier 1 designation. Over half of these individuals have or will develop cancer. In screening the mammography patients for HBOC, we reported that 60% of underserved and 33% of insured patients identified had a prior diagnosis of breast cancer but no testing offered before diagnosis. This population represents a distinct opportunity to reduce cancer incidence, as well as the burden of a primary or secondary cancer diagnosis. Genetic patient navigation is critical in the identification process and care coordination of patients with hereditary cancer. Data from our initial CPRIT grant (PP110220) have shown that coordinated genetic navigation with automated identification of high-risk patients in the mammography setting led to the identification of 35% of new underserved HBOC patients with improvement to 48% after 6 years’ experience (77% in insured population). Personal contact from a patient navigator to discuss a patient’s risk for hereditary cancer and the benefits of genetic counseling/testing was novel in this population. After the second grant year, 39% of underserved HBOC patients were complying with the National Comprehensive Cancer Network (NCCN) management recommendations, compared to 77% of the insured population, which demonstrated a disparity of care. With increased navigation implementation to decrease barriers to care, the HBOC compliance rate in the underserved increased to 71%. Through an additional CPRIT grant (PP160103), we started to screen mammography/gastroenterology patients for LS since only 2% of unaffected individuals with LS have been identified nationally. Cumulatively, our program has detected 258 HBOC/LS mutation carriers through screening/navigation programs. More opportunities to identify and navigate hereditary cancer patients by a variety of healthcare providers are needed. In our experience, patients are more likely to comply with their management recommendations if they hear the same message from multiple clinicians. Cancer navigators, genetic counselors and other stakeholders can benefit from education on genetic navigation tools with scalability for any cancer practice. Overall Project Strategy: We plan to disseminate our knowledge regarding population screening in tandem with genetic navigation tools to the cancer genetics community and cancer patient navigators to facilitate the development of similar programs. Creation of a toolkit with resources, white papers and presentations on navigation tools/strategy will assist in knowledge translation. We have already identified a partner community health hospital system in dissemination of our HBOC/LS mammography screening program. We have identified the cancer genetics programs in Texas that are currently not screening for or tracking outcomes of HBOC/LS patients. We will sponsor focus groups with key stakeholders in these organizations to identify their needs, existing implementation barriers, and guidance on program development. Mentoring genetic counselors and cancer navigators on how to set up a successful population-screening program with navigation and outcome metrics is vital to the further identification and management of high-risk patients. Specific Goals Goal 1: Improvement of identification/care coordination of patients with hereditary cancer by using genetic navigation. Partner with an institution to develop family history screening program. Goal 2: Create a genetic navigation toolkit. Goal 3: Disseminate education on genetic navigation through institutional focus groups; targeted presentations to cancer navigators, survivorship programs, accredited cancer programs, imaging centers without family history screening programs; development of site-specific navigation development plans. Significance and Impact: University of Texas Southwestern Medical Center (UTSW) is the only academic center in the state doing specific genetic navigation for mutation carriers and screening the mammography population for LS. UTSW is also the only center with automated identification of LS risk in unaffected gastroenterology clinic patients. Twenty-seven percent (3/11) of institutions with cancer genetics programs in Texas are currently involved in HBOC screening in the mammography population and 27% (3/11) are currently tracking HBOC/LS management compliance. Sixty-four percent (7/11) are coordinating the evaluation of abnormal tumor screening for LS risk. By developing and expanding population screening with genetic navigation for HBOC/LS in all cancer genetic programs and community hospital systems, we will increase the number of high-risk families identified and reduce the burden of cancer.

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