Evidence map›Paper›PMID 42469582›Full record

ArticleJournal of genetic counseling2026

Preliminary Validation of a Novel Genetic Knowledge Scale for Familial Hypercholesterolemia: Evaluation of Face Validity and Core Concepts.

Emily Moss, Jeffrey Wigle, Claudia Carriles-Landry, Kim Mitchell, Hannah Wand, Jill Slamon, Roya Mostafavi, Amy Yonda, Susan Christian

Abstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of genetic counseling, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

9 authors.

Emily MossDepartment of Biochemistry and Medical Genetics, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.
Jeffrey WigleDepartment of Biochemistry and Medical Genetics, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.
Claudia Carriles-LandryGenomics Laboratory Diagnostic Services, Shared Health Manitoba, Winnipeg, Manitoba, Canada.
Kim MitchellCollege of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.
Hannah WandDivision of Cardiovascular Medicine, Department of Medicine, Standford Medicine, Stanford, California, USA.
Jill SlamonVanderbilt University Medical Centre, Vanderbilt University, Nashville, Tennessee, USA.
Roya MostafaviDepartment of Medicine, Division of Medical Genetics, University of Washington, Seattle, Washington, USA.
Amy YondaPatient Partner, Winnipeg, Manitoba, Canada.
Susan ChristianDepartment of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.ORCID https://orcid.org/0000-0001-5248-3049

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Facilitating patient-informed decision making is central to the genetic counseling practice. The Multidimensional Model of Informed Choice (MMIC) evaluates informed decisions in genetic testing, but validated MMIC measures for inherited cardiac conditions are lacking. This study aimed to begin validating an 8-item true/false knowledge scale specific to familial hypercholesterolemia (FH). Once validated, this scale will form part of an MMIC measure to assess informed choice in the context of genetic testing for this condition. Ten semi-structured cognitive interviews were conducted to examine face validity and the importance of concepts within the scale. A traffic light coding system was used to analyze participant responses. All participants interpreted the items correctly, and minor revisions were made to improve the clarity of six items. Most participants (n = 9) considered all concepts covered by the knowledge scale to be either helpful or necessary to make a decision about genetic testing for FH. This study initiated the validation of a novel genetic knowledge scale specific to FH, to be used as part of a larger measure to assess patient informed choice in the context of genetic testing for this condition. The development and future validation of the genetic knowledge scale for FH can be used in novel research targeted at maximizing patient informed choice among this patient population.

Indexed as

Genetic CounselingHealth Knowledge, Attitudes, PracticeHyperlipoproteinemia Type IIAdultFemaleGenetic TestingHumansMaleMiddle Agedcardiac genetic testingfamilial hypercholesterolemiagenetic counselingmultidimensional model of informed choicepatient reported outcome measures

Identifiers

PMID42469582
PMCPMC13379510

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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.