A Community Health Worker Model to Support Hereditary Cancer Risk Assessment and Genetic Testing

Abstract

OBJECTIVE: To evaluate the effects of a community health worker–supported hereditary cancer risk-assessment and genetic testing program in a safety-net hospital serving more than 70% medically underserved patients. METHODS: This community health worker pilot program began in January 2020 at women’s health clinics by administering original National Comprehensive Cancer Network (NCCN)–based questionnaires. Patients meeting high-risk criteria were offered video-based genetic education and testing, notified of results using telehealth, and offered indicated counseling. We compared the rate of genetic counseling and testing in the first 18 months of the pilot program with that in the prior 18 months. RESULTS: In the first 18 months of the pilot program, 940 patients were screened through the community health worker program: 196 were identified as high-risk, 103 patients were tested, and pathogenic variants were identified in 10 (9.7%), two of whom had a personal cancer history. In addition, 73 patients were tested per usual practice by a certified genetic counselor: pathogenic variants were identified in 16 (21.9%), 11 (68.8%) of whom had a personal cancer history. In the 18 months before the program, 68 patients underwent genetic testing with a certified genetic counselor, pathogenic variants were identified in 16 (23.5%), 13 (81.3%) of whom had a personal cancer history. The community health worker program led to a significant increase in testing among unaffected patients based on family history alone (odds ratio [OR] 7.0; 95% CI 3.7–13.2; P<.001), paralleled by a respective significant increase in the identification of pathogenic variants (OR 4.33; 95% CI 1.0–18.9; P=.051). CONCLUSION: This pilot program demonstrates the feasibility of a community health worker–supported program, using self-administered questionnaires and telehealth-based genetic services in a primarily medically underserved population. This program improved the detection of unaffected high-risk patients based on family history, increasing the volume of tests performed for this indication. Programs of this type may improve family history–based hereditary cancer testing in medically underserved patients, further enabling cancer-prevention strategies.

Enhanced family history-based algorithms increase the identification of individuals meeting criteria for genetic testing of hereditary cancer syndromes but would not reduce disparities on their own

“…Rather, directed strategies are needed to address systemic biases in the underlying data. For example, targeted data collection approaches could be implemented such as using community health workers and self-administered questionnaires to collect abbreviated family history,[ 20 ] digital health navigators to improve access to patient portals for pre-visit questionnaires,[ 21 ] and proactive patient outreach via digital tools to complete missing attributes in family history records.…”