Evidence map›Paper›PMID 28289853›Full record

ArticleJournal of genetic counseling2017

Information Mismatch: Cancer Risk Counseling with Diverse Underserved Patients.

Galen Joseph, Rena J Pasick, Dean Schillinger, Judith Luce, Claudia Guerra, Janice Ka Yan Cheng

Erratum issuedAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of genetic counseling, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 70 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
70citing papers in PubMed, 3 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

70 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
  2. Genetic counseling and testing for Asian Americans: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
    Pooled it
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  20. Underdiagnosis of Fabry disease in minority ethnic groups.Molecular genetics and metabolism reports · 2025
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10 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

6 authors.

Galen JosephDepartment of Anthropology, History & Social Medicine, Helen Diller Family Comprehensive Cancer Center, University of California, 1450 3rd Street, Rm 551, San Francisco, CA, 94143, USA. Galen.Joseph@ucsf.edu.ORCID http://orcid.org/0000-0001-9179-7075
Rena J PasickHelen Diller Family Comprehensive Cancer Center, University of California, San Francisco, USA.
Dean SchillingerDepartment of Medicine, University of California, San Francisco, USA.
Judith LuceDepartment of Medicine, University of California, San Francisco, USA.
Claudia GuerraDepartment of General Internal Medicine, University of California, San Francisco, USA.
Janice Ka Yan ChengDepartment of Psychiatry, University of California, San Francisco, USA.

Funding

Susan G. Komen for the Cure IIR12221854
6 · The paper itself

Abstract

As genetics and genomics become part of mainstream Medicine, these advances have the potential to reduce or exacerbate health disparities. Gaps in effective communication (where all parties share the same meaning) are widely recognized as a major contributor to health disparities. The purpose of this study was to examine GC-patient communication in real time, to assess its effectiveness from the patient perspective, and then to pilot intervention strategies to improve the communication. We observed 64 English-, 35 Spanish- and 25 Chinese-speaking (n = 124) public hospital patients and 10 GCs in 170 GC appointments, and interviewed 49 patients who were offered testing using the audio recordings to stimulate recall and probe specific aspects of the communication. Data analyses were conducted using grounded theory methods and revealed a fundamental mismatch between the information provided by GCs and the information desired and meaningful to patients. Several components of the communication that contributed to this mismatch and often resulted in ineffective communication included: (1) too much information; (2) complex terminology and conceptually difficult presentation of information; (3) information perceived as not relevant by the patient; (4) unintentional inhibition of patient engagement and question-asking; (5) vague discussions of screening and prevention recommendations. Our findings indicate a need to transform the standard model of genetic counseling communication using evidence-based principles and strategies from other fields of Medicine. The high rates of limited health literacy in the US, increasing access of diverse populations to genetic services, and growing complexity of genetic information have created a perfect storm. If not directly addressed, this convergence is likely to exacerbate health disparities in the genomic age.

Indexed as

Cultural DiversityHealthcare DisparitiesFemaleGenetic CounselingHealth LiteracyHumansMaleMiddle AgedNeoplasmsVulnerable PopulationsDisparitiesHealth communicationHealth literacyHereditary cancerImmigrant HealthLimited English proficiency (LEP)Low-incomePatient-provider communication

Identifiers

PMID28289853
PMCPMC5582075

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.