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

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

Journal: Genetics in medicine : official journal of the American College of Medical Genetics 2021;22(8):1401-1406

PMID: 32376981

Free Full Text on Elsevier Science View on PubMed

Abstract

PURPOSE

To better understand the longitudinal risks and benefits of telephone disclosure of genetic test results in the era of multigene panel testing.

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) (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.

RESULTS

Four 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).

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.

Address: Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA, USA.; Fox Chase Cancer Center, Temple University Health System, Biostatistics and Bioinformatics Facility, Philadelphia, PA, USA.; Department of Medical Genetics, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA, USA.; Center for Clinical Cancer Genetics and Global Health, The University of Chicago, Chicago, IL, USA.; Department of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, IL, USA.; Division of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, NJ, USA.; Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA.; Division of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, IL, USA.; Section of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, The University of Chicago, Chicago, IL, USA.; Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA.; Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA, USA. [email protected].; Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA. [email protected].; Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA. [email protected].

DOI: 10.1038/s41436-020-0808-3

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MeSH Terms: Adult, Disclosure, Female, Follow-Up Studies, Genetic Counseling, Genetic Predisposition to Disease, Genetic Testing, Humans, Telephone