Evidence map›Paper›PMID 33455826›Full record

ArticlePatient education and counseling2021

Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers.

Marleah Dean, Ann L Tezak, Sabrina Johnson, Joy K Pierce, Anne Weidner, Kate Clouse, Tuya Pal, Deborah Cragun

Open access · greenAbstract read
In one paragraph

Article in Patient education and counseling, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
24citing papers in PubMed, 1 pooled it
5.4field-weighted citation impact, top 4% of its field
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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

24 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.

  1. Pooled it
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  7. Observational
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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

8 authors at 4 institutions in 1 country.

Marleah DeanDepartment of Communication, University of South Florida, Tampa, FL, USA. Electronic address: marleahdeank@usf.edu.
Ann L TezakVanderbilt-Ingram Cancer Center in the Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
Sabrina JohnsonDepartment of Communication, University of South Florida, Tampa, FL, USA.
Joy K PierceCleveland Clinic, Indian River Hospital, Vero Beach, FL, USA.
Anne WeidnerVanderbilt-Ingram Cancer Center in the Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
Kate ClouseDepartment of Nursing, Vanderbilt University, Nashville, TN, USA.
Tuya PalVanderbilt-Ingram Cancer Center in the Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
Deborah CragunCollege of Public Health, University of South Florida, Tampa, FL, USA.
University of South Florida · USVanderbilt University Medical Center · USCleveland Clinic · USVanderbilt University · US

Funding

Vanderbilt Institute for Clinical and Translational Research (VICTR) -Identifying correlates of functional immunity in SARS-CoV-2 convalescent plasmaUL1TR002243 · NCATS · VANDERBILT UNIVERSITY MEDICAL CENTER · PI Paul A. Harris, Wesley H Self · 2017 to 2026
$130.7M
TISSUE CoreP50CA098131 · NCI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI PARK, BEN HO, PIETENPOL, JENNIFER A · 2003 to 2024
$48.7M
The Vanderbilt Institute for Clinical and Translational Research (VICTR)UL1TR000445 · NCATS · VANDERBILT UNIVERSITY MEDICAL CENTER · PI BERNARD, GORDON RAPHAEL · 2012 to 2016
$41.4M
NCATS NIH HHS UL1 TR000445NCATS NIH HHS UL1 TR002243NCI NIH HHS P50 CA098131
6 · The paper itself

Abstract

objectiveThis study explored motivators and challenges/barriers to sharing personal genetic test results (GTR) with family members (FM).

methodsSemi-structured, in-depth interviews were conducted with 62 women who had a pathogenic or likely pathogenic (P/LP) variant in aBRCA, PALB2, CHEK2, or ATM gene. Selective qualitative data analysis focused on eliciting motivators and challenges/barriers identified by participants when sharing their GTR with FM.

resultsMotivators to sharing personal GTR with FM included: health protection and prevention; moral obligation; decisional empowerment; familial ties; written resources; and contextualization for a familial cause for cancer. Challenges/barriers to family sharing included: concern for FM reactions; complexities of information; lack of closeness; perceived relevance; and emotional impact.

conclusionsAll motivators and challenges/barriers were identified across BRCA and non-BRCA carriers, demonstrating commonalities in family sharing of GTR among high- to moderate-penetrance hereditary BC (breast cancer) genes. Despite challenges/barriers, participants disclosed their GTR with most close FM, yet restrictions in communication and/or strain on the timing, manner of disclosing, and strategies used varied across certain FM. PRACTICE IMPLICATIONS: These findings offer healthcare providers and researchers preliminary practical implications for broadly improving family sharing interventions across P/LP variants in BC risk genes by demonstrating important elements to include in family sharing letters.

Indexed as

Breast NeoplasmsGenetic Predisposition to DiseaseAtaxia Telangiectasia Mutated ProteinsCheckpoint Kinase 2FamilyFanconi Anemia Complementation Group N ProteinFemaleGenetic TestingHumansAtaxia Telangiectasia Mutated ProteinsATM protein, humanCheckpoint Kinase 2CHEK2 protein, humanFanconi Anemia Complementation Group N ProteinPALB2 protein, humanBarriersCancer genetic test resultsChallengesFamily sharingMotivators

Identifiers

PMID33455826
PMCPMC8005459
OpenAlexW3120015998

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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.