Evidence map›Paper›PMID 23067225›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2015

Development of a fragile X syndrome (FXS) knowledge scale: towards a modified multidimensional measure of informed choice for FXS population carrier screening.

Alice G Ames, Alice Jaques, Obioha C Ukoumunne, Alison D Archibald, Rony E Duncan, Jon Emery, Sylvia A Metcalfe

Registry-linked trialOpen access · bronzeAbstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05159011 (Access to Genetic Information Leveraging Innovative Technology), which is not on this map. Cited by 12 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed, 2 pooled it
0.8field-weighted citation impact, top 24% 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.

NCT05159011 nawithdrawnnot on this mapstarted 2023, after this paper: background citation

Access to Genetic Information Leveraging Innovative Technology

TypeinterventionalSponsorRTI InternationalRan2023 to 2025Enrolled0ConditionsGenetic TestingArmsAGILITY (Access to Genetic Information Leveraging Innovative TechnologY)
3 · Its place in the literature

Who cites it

12 citing papers in PubMed, 2 syntheses or guidelines pooled it, 14 citations in OpenAlex.

  1. Pooled it
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  8. Informed decision making and psychosocial outcomes in pregnant and nonpregnant women offered population fragile X carrier screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2017
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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 at 4 institutions in 2 countries.

Alice G AmesDepartment of Paediatrics, The University of Melbourne, Parkville, Vic., Australia; Genetics Education and Health Research, Murdoch Childrens Research Institute, Parkville, Vic., Australia.
Alice Jaques
Obioha C Ukoumunne
Alison D Archibald
Rony E Duncan
Jon Emery
Sylvia A Metcalfe
The University of Melbourne · AUMurdoch Children's Research Institute · AUThe University of Western Australia · AUUniversity of Exeter · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundGenetic carrier screening is increasingly possible for many conditions, but it is important to ensure decisions are informed. The multidimensional measure of informed choice (MMIC) is a quantitative instrument developed to evaluate informed choice in prenatal screening for Down syndrome, measuring knowledge, attitudes and uptake. To apply the MMIC in other screening settings, the knowledge scale must be modified.

objectiveTo develop and validate a modified MMIC knowledge scale for use with women undergoing carrier screening for fragile X syndrome (FXS). SETTING AND

participantsResponses to MMIC items were collected through questionnaires as part of a FXS carrier screening pilot study in a preconception setting in Melbourne, Australia.

designTen knowledge scale items were developed using a modified Delphi technique. Cronbach's alpha and factor analysis were used to validate the new FXS knowledge scale. We summarized the knowledge, attitudes and informed choice status based on the modified MMIC.

resultsTwo hundred and eighty-five women were recruited, 241 eligible questionnaires were complete for analysis. The FXS knowledge scale items measured one salient construct and were internally consistent (alpha = 0.70). 71% (172/241) of participants were classified as having good knowledge, 70% (169/241) had positive attitudes and 27% (65/241) made an informed choice to accept or decline screening. DISCUSSION AND

conclusionsWe present the development of a knowledge scale as part of a MMIC to evaluate informed choice in population carrier screening for FXS. This can be used as a template by other researchers to develop knowledge scales for other conditions for use in the MMIC.

Indexed as

Choice BehaviorHealth Knowledge, Attitudes, PracticeAdolescentAdultDelphi TechniqueFemaleFragile X SyndromeGenetic TestingHeterozygoteHumansInformed ConsentMiddle AgedPilot ProjectsPsychometricsSurveys and QuestionnairesYoung Adultdecision-makingevaluationfragile X syndromeinformed choicemeasurement scalesscreening

Identifiers

PMID23067225
PMCPMC5060759
OpenAlexW2038750657

What OpenQuestion holds

Textmetadata
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Registered trials

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.