Patient Engagement With Clinicians and Family Members About Genetic Test Results Across Risk Groups in Women With Hereditary Cancer Susceptibility

PURPOSE: To examine patient report of engagement with clinicians and relatives about their germline genetic test results across risk groups in women diagnosed with cancer. PATIENTS AND METHODS: moderate risk) or a variant of unknown significance (VUS) about 4 years after diagnosis (N = 1,767, 52.4% response rate). RESULTS: Most patients with PVs (84.5%) had a genetic counseling visit to discuss test results, and a majority (70.6%) were encouraged to share results with relatives with no difference across PV risk groups. Half of the patients with PV reported that a genetic counselor gave them advice about how to talk to relatives and one third reported that a counselor talked directly with a relative. Physician engagement with patients about family communication of test results was low: one third of patients with high-risk PV reported that their oncologist encouraged them to share results with relatives. Patients with PV shared test results with 80% of first-degree relatives and one third of second-degree relatives. Compared with patients with PVs, those with VUS had less engagement with clinicians about sharing test results with relatives; were less likely to believe that they had a responsibility to share results with family; and were less likely to share results with relatives. CONCLUSION: Patients with PVs share results with many family members but clinician support is insufficient, especially among cancer doctors. A substantial proportion of patients with VUS-only engage relatives about results but more research is needed about the nature of the discussions regarding these indeterminate findings.