Evidence map›Paper›PMID 33455827›Full record

ArticlePatient education and counseling2021

What improves the likelihood of people receiving genetic test results communicating to their families about genetic risk?

Deborah J Bowen, Sukh Makhnoon, Brian H Shirts, Stephanie M Fullerton, Eric Larson, James D Ralston, Kathleen Leppig, David R Crosslin, David Veenstra, Gail P Jarvik

Abstract read
PubMed Full text at PMC Publisher
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 12 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed, 1 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

12 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Trial
  3. Article
  4. Article
  5. Article
  6. Article
  7. Review
  8. Article
  9. Article
  10. Review
  11. Article
  12. Article
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

10 authors.

Deborah J BowenDepartment of Bioethics and Humanities, University of Washington, Seattle, USA. Electronic address: dbowen@uw.edu.
Sukh MakhnoonDepartment of Behavioral Science, UT MD Anderson Cancer Center, Houston, USA.
Brian H ShirtsDepartment of Laboratory Medicine, University of Washington, Seattle, USA.
Stephanie M FullertonDepartment of Bioethics and Humanities, University of Washington, Seattle, USA.
Eric LarsonKaiser Permanente Washington Health Research Institute, Seattle, USA.
James D RalstonKaiser Permanente Washington Health Research Institute, Seattle, USA; Department of Bioinformatics and Medical Education, University of Washington, Seattle, USA.
Kathleen LeppigGenetic Services, Kaiser Permanente Washington Health Research Institute, Seattle, USA.
David R CrosslinDepartment of Bioinformatics and Medical Education, University of Washington, Seattle, USA.
David VeenstraDepartment of Pharmacy, University of Washington, Seattle, USA.
Gail P JarvikDepartments of Medicine (Medical Genetics) and Genome Sciences, University of Washington Medical Center, Seattle, USA.

Funding

Variation, Function, and Disease Supplement ProgramU01HG008657 · NHGRI · UNIVERSITY OF WASHINGTON · PI David Russell Crosslin, Gail Pairitz Jarvik · 2015 to 2026
$13.4M
NHGRI NIH HHS U01 HG008657
6 · The paper itself

Abstract

objectiveWe currently rely on probands to communicate genetic testing results and health risks within a family to stimulate preventive behaviors, such as cascade testing. Rates of guidelines-based cascade testing are low, possibly due to low frequency or non-urgent communication of risk among family members. Understanding what is being communicated and why may help improve interventions that increase communication and rates of cascade testing.

methodsParticipants (n = 189) who were to receive both positive and negative colorectal cancer (CRC) sequencing results completed surveys on family communication, family functioning, impact of cancer in the family, and future communication of risk and were participants in eMERGE3. Questions were taken from existing surveys and administered electronically using email and a web driven tool.

resultsCommon family member targets of CRC risk communication, before results were received, were mothers and fathers, then sisters and grandchildren and finally, children and brothers. A communication impact score of 0.66 (sd = 0.83) indicated low-to-moderate communication impact. Age and education were significantly associated with frequency of familial communication, but not on the cancer-related impact of familial communication.

conclusionsThere is infrequent communication about cancer risk from probands to family members. PRACTICE IMPLICATIONS: These results demonstrate an opportunity to help families improve communication.

Indexed as

Colorectal NeoplasmsGenetic TestingCommunicationFamilyFemaleGenetic Predisposition to DiseaseHumansMaleRisk FactorsCRC riskFamilial communication

Identifiers

PMID33455827
PMCPMC8005444

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.