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BMC Medical Informatics and Decision Making
Published in: BMC Medical Informatics and Decision Making 1/2015

Open Access 01-12-2015 | Research article

Decision aids that support decisions about prenatal testing for Down syndrome: an environmental scan

Authors: Maria Esther Leiva Portocarrero, Mirjam M Garvelink, Maria Margarita Becerra Perez, Anik Giguère, Hubert Robitaille, Brenda J. Wilson, François Rousseau, France Légaré

Published in: BMC Medical Informatics and Decision Making | Issue 1/2015

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Abstract

Background

Prenatal screening tests for Down syndrome (DS) are routine in many developed countries and new tests are rapidly becoming available. Decisions about prenatal screening are increasingly complex with each successive test, and pregnant women need information about risks and benefits as well as clarity about their values. Decision aids (DAs) can help healthcare providers support women in this decision. Using an environmental scan, we aimed to identify publicly available DAs focusing on prenatal screening/diagnosis for Down syndrome that provide effective support for decision making.

Methods

Data sources searched were the Decision Aids Library Inventory (DALI) of the Ottawa Patient Decision Aids Research Group at the Ottawa Health Research Institute; Google searches on the internet; professional organizations, academic institutions and other experts in the field; and references in existing systematic reviews on DAs. Eligible DAs targeted pregnant women, focused on prenatal screening and/or diagnosis, applied to tests for fetal abnormalities or aneuploidies, and were in French, English, Spanish or Portuguese. Pairs of reviewers independently identified eligible DAs and extracted characteristics including the presence of practical decision support tools and features to aid comprehension. They then performed quality assessment using the 16 minimum standards established by the International Patient Decision Aids Standards (IPDASi v4.0).

Results

Of 543 potentially eligible DAs (512 in DALI, 27 from experts, and four on the internet), 23 were eligible and 20 were available for data extraction. DAs were developed from 1996 to 2013 in six countries (UK, USA, Canada, Australia, Sweden, and France). Five DAs were for prenatal screening, three for prenatal diagnosis and 12 for both). Eight contained values clarification methods (personal worksheets). The 20 DAs scored a median of 10/16 (range 6–15) on the 16 IPDAS minimum standards.

Discussion

None of the 20 included DAs met all 16 IPDAS minimum standards, and few included practical decision support tools or aids to comprehension.

Conclusions

Our results indicate there is a need for DAs that effectively support decision making regarding prenatal testing for Down syndrome, especially in light of the recently available non-invasive prenatal screening tests.
Appendix
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Metadata
Title
Decision aids that support decisions about prenatal testing for Down syndrome: an environmental scan
Authors
Maria Esther Leiva Portocarrero
Mirjam M Garvelink
Maria Margarita Becerra Perez
Anik Giguère
Hubert Robitaille
Brenda J. Wilson
François Rousseau
France Légaré
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2015
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-015-0199-6

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