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

2020; Elsevier BV; Volume: 22; Issue: 8 Linguagem: Inglês

10.1038/s41436-020-0808-3

1530-0366

Madison K. Kilbride, Brian L. Egleston, Michael J. Hall, Linda Patrick‐Miller, Mary B. Daly, Pamela Ganschow, Generosa Grana, Olufunmilayo I. Olopade, Dominique Fetzer, Amanda Brandt, Rachelle Chambers, Dana Clark, Andrea Forman, Rikki Gaber, Cassandra Gulden, Janice Horte, Jessica M. Long, Terra Lucas, Shreshtha Madaan, Kristin Mattie, Danielle McKenna, Susan Montgomery, Sarah M. Nielsen, Jacquelyn Powers, Kim Rainey, Christina Rybak, Michelle Savage, Christina Seelaus, Jessica Stoll, Jill E. Stopfer, Xinxin Yao, Susan M. Domchek, Angela R. Bradbury,

Ethics in Clinical Research

PurposeTo better understand the longitudinal risks and benefits of telephone disclosure of genetic test results in the era of multigene panel testing.MethodsAdults who were proceeding with germline cancer genetic testing were randomized to telephone disclosure (TD) with a genetic counselor or in-person disclosure (IPD) (i.e., usual care) of test results. All participants who received TD were recommended to return to meet with a physician to discuss medical management recommendations.ResultsFour hundred seventy-three 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%) compared with those who had TD and returned (86%) and those who had IPD (87%, adjusted p<0.01).ConclusionTelephone 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.