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

cancer genetic testing communication of genetic test results medical management after genetic testing multigene panel testing telephone communication

Journal

Genetics in medicine : official journal of the American College of Medical Genetics
ISSN: 1530-0366
Titre abrégé: Genet Med
Pays: United States
ID NLM: 9815831

Informations de publication

Date de publication:
08 2020
Historique:
received: 27 09 2019
accepted: 02 04 2020
revised: 01 04 2020
pubmed: 8 5 2020
medline: 28 4 2021
entrez: 8 5 2020
Statut: ppublish

Résumé

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

Identifiants

pubmed: 32376981
doi: 10.1038/s41436-020-0808-3
pii: S1098-3600(21)00690-0
pmc: PMC7396300
mid: NIHMS1595415
doi:

Types de publication

Journal Article Randomized Controlled Trial Research Support, N.I.H., Extramural

Langues

eng

Sous-ensembles de citation

IM

Pagination

1401-1406

Subventions

Organisme : NCI NIH HHS
ID : P30 CA006927
Pays : United States
Organisme : NCI NIH HHS
ID : R01 CA160847
Pays : United States
Organisme : NHGRI NIH HHS
ID : T32 HG009496
Pays : United States

Références

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Auteurs

Madison K Kilbride (MK)

Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA, USA.

Brian L Egleston (BL)

Fox Chase Cancer Center, Temple University Health System, Biostatistics and Bioinformatics Facility, Philadelphia, PA, USA.

Michael J Hall (MJ)

Department of Medical Genetics, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA, USA.

Linda J Patrick-Miller (LJ)

Center for Clinical Cancer Genetics and Global Health, The University of Chicago, Chicago, IL, USA.

Mary B Daly (MB)

Department of Medical Genetics, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA, USA.

Pamela Ganschow (P)

Department of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, IL, USA.

Generosa Grana (G)

Division of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, NJ, USA.

Olufunmilayo I Olopade (OI)

Center for Clinical Cancer Genetics and Global Health, The University of Chicago, Chicago, IL, USA.

Dominique Fetzer (D)

Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA.

Amanda Brandt (A)

Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA.

Rachelle Chambers (R)

Division of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, IL, USA.

Dana F Clark (DF)

Division of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, NJ, USA.

Andrea Forman (A)

Department of Medical Genetics, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA, USA.

Rikki Gaber (R)

Department of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, IL, USA.

Cassandra Gulden (C)

Division of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, IL, USA.

Janice Horte (J)

Division of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, NJ, USA.

Jessica M Long (JM)

Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA.

Terra Lucas (T)

Department of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, IL, USA.

Shreshtha Madaan (S)

Division of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, IL, USA.

Kristin Mattie (K)

Division of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, NJ, USA.

Danielle McKenna (D)

Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA.

Susan Montgomery (S)

Department of Medical Genetics, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA, USA.

Sarah Nielsen (S)

Division of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, IL, USA.

Jacquelyn Powers (J)

Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA.

Kim Rainey (K)

Department of Medical Genetics, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA, USA.

Christina Rybak (C)

Department of Medical Genetics, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA, USA.

Michelle Savage (M)

Department of Medical Genetics, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA, USA.

Christina Seelaus (C)

Department of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, IL, USA.

Jessica Stoll (J)

Section of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, The University of Chicago, Chicago, IL, USA.

Jill E Stopfer (JE)

Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA.

Xinxin Shirley Yao (XS)

Division of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, NJ, USA.

Susan M Domchek (SM)

Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA.
Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA.

Angela R Bradbury (AR)

Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA, USA. Angela.Bradbury@uphs.upenn.edu.
Department of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA, USA. Angela.Bradbury@uphs.upenn.edu.
Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA. Angela.Bradbury@uphs.upenn.edu.

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