Design and Evaluation of a Decision Aid for Inviting Parents to Participate in a Fragile X Newborn Screening Pilot Study View Full Text


Ontology type: schema:ScholarlyArticle     


Article Info

DATE

2013-02

AUTHORS

Donald B. Bailey, Megan A. Lewis, Shelly L. Harris, Tracey Grant, Carla Bann, Ellen Bishop, Myra Roche, Sonia Guarda, Leah Barnum, Cynthia Powell, Bradford L. Therrell

ABSTRACT

The major objectives of this project were to develop and evaluate a brochure to help parents make an informed decision about participation in a fragile X newborn screening study. We used an iterative development process that drew on principles of Informed Decision Making (IDM), stakeholder input, design expertise, and expert evaluation. A simulation study with 118 women examined response to the brochure. An independent review rated the brochure high on informational content, guidance, and values. Mothers took an average of 6.5 min to read it and scored an average of 91.1 % correct on a knowledge test. Most women rated the brochure as high quality and trustworthy. When asked to make a hypothetical decision about study participation, 61.9 % would agree to screening. Structural equation modeling showed that agreement to screening and decisional confidence were associated with perceived quality and trust in the brochure. Minority and white mothers did not differ in perceptions of quality or trust. We demonstrate the application of IDM in developing a study brochure. The brochure was highly rated by experts and consumers, met high standards for IDM, and achieved stated goals in a simulation study. The IDM provides a model for consent in research disclosing complicated genetic information of uncertain value. More... »

PAGES

108-117

Identifiers

URI

http://scigraph.springernature.com/pub.10.1007/s10897-012-9511-0

DOI

http://dx.doi.org/10.1007/s10897-012-9511-0

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1017226356

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/22736213


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Download the RDF metadata as:  json-ld nt turtle xml License info

HOW TO GET THIS DATA PROGRAMMATICALLY:

JSON-LD is a popular format for linked data which is fully compatible with JSON.

curl -H 'Accept: application/ld+json' 'https://scigraph.springernature.com/pub.10.1007/s10897-012-9511-0'

N-Triples is a line-based linked data format ideal for batch operations.

curl -H 'Accept: application/n-triples' 'https://scigraph.springernature.com/pub.10.1007/s10897-012-9511-0'

Turtle is a human-readable linked data format.

curl -H 'Accept: text/turtle' 'https://scigraph.springernature.com/pub.10.1007/s10897-012-9511-0'

RDF/XML is a standard XML format for linked data.

curl -H 'Accept: application/rdf+xml' 'https://scigraph.springernature.com/pub.10.1007/s10897-012-9511-0'


 

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292 schema:name RTI International, 3040 Cornwallis Road, 27709, Research Triangle Park, NC, USA
293 rdf:type schema:Organization
 




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