Evidence map›Paper›PMID 30417332›Full record

Trial reportClinical genetics2019

Preferences for in-person disclosure: Patients declining telephone disclosure characteristics and outcomes in the multicenter Communication Of GENetic Test Results by Telephone study.

Nina Beri, Linda J Patrick-Miller, Brian L Egleston, Michael J Hall, Susan M Domchek, Mary B Daly, Pamela Ganschow, Generosa Grana, Olufunmilayo I Olopade, Dominique Fetzer and 23 more

Registry-linked trialAbstract readMulticenter StudyRandomized Controlled TrialEquivalence Trial
In one paragraph

Trial report in Clinical genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01736345 (A Study of the Communication of Genetic Test Results by Telephone), which is not on this map. Cited by 15 papers.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT01736345 completednot on this map

A Study of the Communication of Genetic Test Results by Telephone: a Multi-center Study

TypeobservationalSponsorAbramson Cancer Center at Penn MedicineRan2012 to 2015Enrolled289ConditionsCandidates for BRCA 1/2 Genetic TestingArmsGenetic Providers, Visual Aids, Post-Disclosure Asessments, In-person Clinical Follow-Up, 6 Month and 12 Month Assessments
3 · Its place in the literature

Who cites it

15 citing papers in PubMed.

  1. Review
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  10. Review
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  12. Patients' and professionals' perspective of non-in-person visits in hereditary cancer: predictors and impact of the COVID-19 pandemic.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
    Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

33 authors.

Nina BeriDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
Linda J Patrick-MillerCenter for Clinical Cancer Genetics and Global Health, The University of Chicago, Chicago, Illinois.
Brian L EglestonFox Chase Cancer Center, Temple University Health System, Biostatistics and Bioinformatics Facility, Philadelphia, Pennsylvania.
Michael J HallFox Chase Cancer Center, Temple University Health System, Department of Medical Genetics, Philadelphia, Pennsylvania.
Susan M DomchekDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
Mary B DalyFox Chase Cancer Center, Temple University Health System, Department of Medical Genetics, Philadelphia, Pennsylvania.
Pamela GanschowDepartment of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, Illinois.
Generosa GranaDivision of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, New Jersey.
Olufunmilayo I OlopadeCenter for Clinical Cancer Genetics and Global Health, The University of Chicago, Chicago, Illinois.
Dominique FetzerDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
Amanda BrandtDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
Rachelle ChambersDivision of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, Illinois.
Dana F ClarkDivision of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, New Jersey.
Andrea FormanFox Chase Cancer Center, Temple University Health System, Department of Medical Genetics, Philadelphia, Pennsylvania.
Rikki GaberDepartment of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, Illinois.
Cassandra GuldenDivision of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, Illinois.
Janice HorteDivision of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, New Jersey.
Jessica LongDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
Terra LucasDepartment of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, Illinois.
Shreshtha MadaanDivision of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, Illinois.
Kristin MattieDivision of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, New Jersey.
Danielle McKennaDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
Susan MontgomeryFox Chase Cancer Center, Temple University Health System, Department of Medical Genetics, Philadelphia, Pennsylvania.
Sarah NielsenDivision of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, Illinois.
Jacquelyn PowersDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
Kim RaineyFox Chase Cancer Center, Temple University Health System, Department of Medical Genetics, Philadelphia, Pennsylvania.
Christina RybakFox Chase Cancer Center, Temple University Health System, Department of Medical Genetics, Philadelphia, Pennsylvania.
Michelle SavageFox Chase Cancer Center, Temple University Health System, Department of Medical Genetics, Philadelphia, Pennsylvania.
Christina SeelausDepartment of Internal Medicine, The John H. Stroger Jr. Hospital of Cook County, Chicago, Illinois.
Jessica StollDivision of Hematology-Oncology, Department of Medicine, The University of Chicago, Chicago, Illinois.
Jill E StopferDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.
Xinxin Shirley YaoDivision of Hematology-Oncology, MD Anderson Cancer Center at Cooper, Camden, New Jersey.
Angela R BradburyDepartment of Medicine, Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, Pennsylvania.ORCID 0000-0001-9607-6402

Funding

WORD PROCESSING CENTER--COREP30CA006927 · NCI · RESEARCH INST OF FOX CHASE CAN CTR · PI Dietmar J Kappes · 1985 to 2026
$138.8M
Communicating Genetic Test Results by Telephone: A Randomized TrialR01CA160847 · NCI · UNIVERSITY OF PENNSYLVANIA · PI BRADBURY, ANGELA R. · 2012 to 2015
$2.5M
NCI NIH HHS P30 CA006927NCI NIH HHS R01 CA160847
6 · The paper itself

Abstract

Telephone disclosure of cancer genetic test results is noninferior 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 multicenter, randomized, noninferiority 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 multigene 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 pretest 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.

Indexed as

CommunicationPatient PreferenceTruth DisclosureAdultAgedBiomarkers, TumorFemaleGenetic CounselingGenetic Predisposition to DiseaseGenetic TestingHereditary Breast and Ovarian Cancer SyndromeHumansMaleMiddle AgedNeoplastic Syndromes, HereditaryOutcome Assessment, Health CareBiomarkers, Tumorcancer genetic testinggenetic counselingin-person disclosure preferenceresult disclosuretelephone disclosure

Identifiers

PMID30417332
PMCPMC6453119

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.