Preferences for in-person disclosure: Patients declining telephone disclosure characteristics and outcomes in the multi-center COGENT Study.

Beri N1, Patrick-Miller LJ2, Egleston BL3, Hall MJ4, Domchek SM1,5, Daly MB4, Ganschow P6, Grana G7, Olopade OI2, Fetzer D1, Brandt A1, Chambers R8, Clark DF7, Forman A4, Gaber R6, Gulden C8, Horte J7, Long J1, Lucas T6, Madaan S8, Mattie K7, McKenna D1, Montgomery S4, Nielsen S8, Powers J1, Rainey K4, Rybak C4, Savage M4, Seelaus C6, Stoll J8, Stopfer JE1, Yao XS7, Bradbury AR1,9.

Author information

Abstract

Telephone disclosure of cancer genetic test results is non-inferior to in-person disclosure. However, how patients who prefer in-person communication of results differ from those who agree to telephone disclosure is unclear but important when considering delivery models for genetic medicine. Patients undergoing cancer genetic testing were recruited to a multi-center, randomized, non-inferiority trial (NCT01736345) comparing telephone to in-person disclosure of genetic test results. We evaluated preferences for in-person disclosure, factors associated with this preference and outcomes compared to those who agreed to randomization. Among 1178 enrolled patients, 208 (18%) declined randomization, largely given a preference for in-person disclosure. These patients were more likely to be older (p=0.007) and to have had multi-gene panel testing (p<0.001). General anxiety (p=0.007), state anxiety (p=0.008), depression (p=0.011), cancer-specific distress (p=0.021) and uncertainty (p=0.03) were higher after pre-test counseling. After disclosure of results, they also had higher general anxiety (p=0.003), depression (p=0.002) and cancer-specific distress (p=0.043). While telephone disclosure is a reasonable alternative to in-person disclosure in most patients, some patients have a strong preference for in-person communication. Patient age, distress and complexity of testing are important factors to consider and requests for in-person disclosure should be honored when possible.