title: Decision aids that support decisions about prenatal testing for Down syndrome: an environmental scan.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Research Axis of Population Health and Practice-Changing Research, CHU de Québec Research Centre, Saint-François-d'Assise Hospital, 10, rue de l'Espinay, Quebec, QC, G1L 3L5, Canada.
authors.forename: Maria Esther
authors.initials: ME
authors.lastname: Leiva Portocarrero
authors.affiliation: Research Axis of Population Health and Practice-Changing Research, CHU de Québec Research Centre, Saint-François-d'Assise Hospital, 10, rue de l'Espinay, Quebec, QC, G1L 3L5, Canada.
authors.forename: Mirjam M
authors.initials: MM
authors.lastname: Garvelink
authors.affiliation: Research Axis of Population Health and Practice-Changing Research, CHU de Québec Research Centre, Saint-François-d'Assise Hospital, 10, rue de l'Espinay, Quebec, QC, G1L 3L5, Canada.
authors.forename: Maria Margarita
authors.initials: MM
authors.lastname: Becerra Perez
authors.affiliation: Centre d'excellence sur le vieillissement de Québec, CHU de Québec Research Centre, Saint-François-d'Assise Hospital, 10, rue de l'Espinay, Quebec, QC, G1L 3L5, Canada.|Department of Family Medicine and Emergency Medicine, Pavillon Ferdinand-Vandry, Université Laval, 1050, avenue de la Médecine, Quebec, QC, G1V 0A6, Canada.
authors.forename: Anik
authors.initials: A
authors.lastname: Giguère
authors.affiliation: Research Axis of Population Health and Practice-Changing Research, CHU de Québec Research Centre, Saint-François-d'Assise Hospital, 10, rue de l'Espinay, Quebec, QC, G1L 3L5, Canada.
authors.forename: Hubert
authors.initials: H
authors.lastname: Robitaille
authors.affiliation: Department of Epidemiology and Community Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H 8M5, Canada.
authors.forename: Brenda J
authors.initials: BJ
authors.lastname: Wilson
authors.affiliation: Department of Molecular biology, Medical Biochemistry and Pathology, Faculty of Medicine, Pavillon Ferdinand-Vandry, Université Laval, 1050, avenue de la Médecine, Quebec, QC, G1V 0A6, Canada.|MSSS/FRQS/CHUQ Research Chair in Health Technology Assessment and Evidence-based Laboratory Medicine, Saint-François-d'Assise Hospital, 10, rue de l'Espinay, Quebec, QC, G1L 3L5, Canada.
authors.forename: François
authors.initials: F
authors.lastname: Rousseau
authors.affiliation: Research Axis of Population Health and Practice-Changing Research, CHU de Québec Research Centre, Saint-François-d'Assise Hospital, 10, rue de l'Espinay, Quebec, QC, G1L 3L5, Canada. France.Legare@mfa.ulaval.ca.|Department of Family Medicine and Emergency Medicine, Pavillon Ferdinand-Vandry, Université Laval, 1050, avenue de la Médecine, Quebec, QC, G1V 0A6, Canada. France.Legare@mfa.ulaval.ca.
authors.forename: France
authors.initials: F
authors.lastname: Légaré
mesh_terms: D000328:Adult; D003657:Decision Making; D003661:Decision Support Techniques; D004314:Down Syndrome / Q000175:diagnosis*; D005260:Female; D006801:Humans; D008491:Medical Informatics Applications; D011247:Pregnancy; D011296:Prenatal Diagnosis