Longitudinal follow-up after telephone disclosure in the randomized COGENT Study

PURPOSE: To better understand the longitudinal risks and benefits of telephone disclosure of genetic test results in the era of multi-gene panel testing. PATIENTS AND METHODS: Adults who were proceeding with germline cancer genetic testing were randomized to telephone disclosure (TD) with a genetic counselor or in-person disclosure (IPD) of test results (i.e., usual care). All participants who received TD were recommended to return to meet with a physician to discuss medical management recommendations. RESULTS: 473 participants were randomized to TD and 497 to IPD. There were no differences between arms for any cognitive, affective or behavioral outcomes at 6 and 12 months. Only 50% of participants in the TD arm returned for the medical follow-up appointment. Returning was associated with site (p<0.0001), being female (p=0.047), and not having a true negative result (p<0.002). Mammography was lower at 12 months among those who had TD and did not return for medical follow-up (70%) as compared to those who had TD and returned (86%) and those who had IPD (87%, adjusted p <0.01). CONCLUSION: Telephone disclosure of genetic test results is a reasonable alternative to in-person disclosure, but attention to medical follow-up may remain important for optimizing appropriate use of genetic results.