Evidence map›Paper›PMID 28492536›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2017

Quantifying family dissemination and identifying barriers to communication of risk information in Australian BRCA families.

Emma Healey, Natalie Taylor, Sian Greening, Claire E Wakefield, Linda Warwick, Rachel Williams, Kathy Tucker

Abstract read
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In one paragraph

Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 6 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
32citing papers in PubMed, 6 pooled it
–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.

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

32 citing papers in PubMed, 6 syntheses or guidelines pooled it.

  1. Systematic evidence review and meta-analysis of outcomes associated with cancer genetic counseling.Genetics in medicine : official journal of the American College of Medical Genetics · 2024
    Pooled it
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  3. Cascade Testing for Hereditary Cancer Syndromes: Should We Move Toward Direct Relative Contact? A Systematic Review and Meta-Analysis.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2022
    Pooled it
  4. Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review.International journal of environmental research and public health · 2022
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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

7 authors.

Emma HealeyPrince of Wales Clinical School, Faculty of Medicine, University of New South Wales, Randwick, Australia.
Natalie TaylorCentre for Healthcare Resilience and Implementation Science, Australian Institute of Health Innovation, Macquarie University, Sydney, Australia.
Sian GreeningIllawarra Cancer Care Centre, Wollongong Hospital, Wollongong, Australia.
Claire E WakefieldKids Cancer Centre, Sydney Children's Hospital, Randwick, Australia.
Linda WarwickACT Genetic Service, The Canberra Hospital, Woden, Australia.
Rachel WilliamsPrince of Wales Clinical School, Faculty of Medicine, University of New South Wales, Randwick, Australia.
Kathy TuckerHereditary Cancer Clinic, Prince of Wales Hospital, Sydney, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

PurposeRecommendations for BRCA1 and BRCA2 mutation carriers to disseminate information to at-risk relatives pose significant challenges. This study aimed to quantify family dissemination, to explain the differences between fully informed families (all relatives informed verbally or in writing) and partially informed families (at least one relative uninformed), and to identify dissemination barriers.MethodsBRCA1 and BRCA2 mutation carriers identified from four Australian hospitals (n=671) were invited to participate in the study. Distress was measured at consent using the Kessler psychological distress scale (K10). A structured telephone interview was used to assess the informed status of relatives, geographical location of relatives, and dissemination barriers. Family dissemination was quantified, and fully versus partially informed family differences were examined. Dissemination barriers were thematically coded and counted.ResultsA total of 165 families participated. Information had been disseminated to 81.1% of relatives. At least one relative had not been informed in 52.7% of families, 4.3% were first-degree relatives, 27.0% were second-degree relatives, and 62.0% were cousins. Partially informed families were significantly larger than fully informed families, had fewer relatives living in close proximity, and exhibited higher levels of distress. The most commonly recorded barrier to dissemination was loss of contact.ConclusionLarger, geographically diverse families have greater difficulty disseminating BRCA mutation risk information to all relatives. Understanding these challenges can inform future initiatives for communication, follow-up and support.

Indexed as

CommunicationFamilyGenes, BRCA1Genes, BRCA2Information DisseminationPublic Health SurveillanceAdultAgedAged, 80 and overAustraliaFemaleGenetic Predisposition to DiseaseGenetic TestingHumansMaleMiddle Aged

Identifiers

PMID28492536

What OpenQuestion holds

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Read underepoch 390

Registered trials

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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.