Evidence map›Paper›PMID 32102811›Full record

ArticleBMJ open2020

When to break the news and whose responsibility is it? A cross-sectional qualitative study of health professionals' views regarding disclosure of BRCA genetic cancer risk.

Alison Luk Young, Phyllis N Butow, Katherine M Tucker, Claire E Wakefield, Emma Healey, Rachel Williams

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed, 1 pooled it
1.4field-weighted citation impact, top 18% 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

11 citing papers in PubMed, 1 synthesis or guideline pooled it, 20 citations in OpenAlex.

  1. Pooled it
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  11. Empathy and boundary turbulence in cancer communication.Patient education and counseling · 2021
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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

6 authors at 3 institutions in 3 countries.

Alison Luk YoungThe University of Sydney, Faculty of Science, School of Psychology, Centre for Medical Psychology & Evidence-based Decision-making (CeMPED), Sydney, New South Wales, Australia ayou1666@uni.sydney.edu.au.ORCID 0000-0002-0810-4256
Phyllis N ButowThe University of Sydney, Faculty of Science, School of Psychology, Centre for Medical Psychology & Evidence-based Decision-making (CeMPED), Sydney, New South Wales, Australia.
Katherine M TuckerPrince of Wales Clinical School, Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia.
Claire E WakefieldKids Cancer Centre, Sydney Children's Hospital Randwick, Sydney, New South Wales, Australia.
Emma HealeyIllawarra Cancer Care Centre, Wollongong Hospital, Wollongong, New South Wales, Australia.
Rachel WilliamsPrince of Wales Clinical School, Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia.
UNSW Sydney · AUThe University of Sydney · AUWollongong Hospital · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesDisclosure of a hereditary condition in the family poses notable challenges for patients who often seek the assistance of genetic health professionals (GHPs). This study aimed to investigate GHPs' opinions about the ideal time for disclosure to offspring and their responsibility to at-risk relatives.

designCross-sectional qualitative study.

settingGenetic familial cancer clinics related to mostly secondary and tertiary care hospitals and centres in urban, regional and rural areas across all states of Australia.

participantsGHPs (N=73) including clinical geneticists, genetic counsellors, medical specialists, nurses, surgeons and mental health specialists (eg, psychiatrists, psychologists) who had worked with

resultsFocus groups and interviews were transcribed and analysed thematically. GHPs perceived that life stage, maturity, parents' knowledge and capacity to disseminate information influenced parent-offspring disclosure. In general, GHPs recommended early informal conversations with offspring about a family illness. GHPs considered that facilitation of disclosure to relatives using counselling strategies was their responsibility, yet there were limitations to their role (eg, legal and resource constraints). Variability exists in the extent to which genetic clinics overcome challenges to disclosure.

conclusionsGHPs' views on the ideal time for the disclosure of genetic risk are generally dependent on the patient's age and relative's ability to disclose information. A responsibility towards the patient and their at-risk relative was widely accepted as a role of a GHP but views vary depending on legislative and specialty differences. Greater uniformity is needed in genetic procedural guidelines and the role of each discipline (eg, geneticists, genetic counsellors, oncologists, nurses and mental health specialists) in genetic clinics to manage disclosure challenges.

Indexed as

AustraliaConfidentialityCross-Sectional StudiesFemaleFocus GroupsGenes, BRCA1Genes, BRCA2Genetic CounselingGenetics, MedicalGenetic TestingHealth PersonnelHumansMaleProfessional-Patient RelationsTruth Disclosuredisclosureduty to warnethical issuesgenetic privacygeneticsgenetic testing

Identifiers

PMID32102811
PMCPMC7045026
OpenAlexW3007591302

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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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.