title: Informed Choice for Participation in Down Syndrome Screening: Development and Content of a Web-Based Decision Aid.
abstract: BACKGROUND
  In Denmark, all pregnant women are offered screening in early pregnancy to estimate the risk of having a fetus with Down syndrome. Pregnant women participating in the screening program should be provided with information and support to allow them to make an informed choice. There is increasing interest in the use of Web-based technology to provide information and digital solutions for the delivery of health care.
  
  
  OBJECTIVE
  The aim of this study was to develop an eHealth tool that contained accurate and relevant information to allow pregnant women to make an informed choice about whether to accept or reject participation in screening for Down syndrome.
  
  
  METHODS
  The development of the eHealth tool involved the cooperation of researchers, technology experts, clinicians, and users. The underlying theoretical framework was based on participatory design, the International Patient Decision Aid Standards (IPDAS) Collaboration guide to develop a patient decision aid, and the roadmap for developing eHealth technologies from the Center for eHealth Research and Disease Management (CeHRes). The methods employed were a systematic literature search, focus group interviews with 3 care providers and 14 pregnant women, and 2 weeks of field observations. A qualitative descriptive approach was used in this study.
  
  
  RESULTS
  Relevant themes from pregnant women and care providers with respect to information about Down syndrome screening were identified. Based on formalized processes for developing patient decision aids and eHealth technologies, an interactive website containing information about Down syndrome, methods of screening, and consequences of the test was developed. The intervention was based on user requests and needs, and reflected the current hospital practice and national guidelines.
  
  
  CONCLUSIONS
  This paper describes the development and content of an interactive website to support pregnant women in making informed choices about Down syndrome screening. To develop the website, we used a well-structured process based on scientific evidence and involved pregnant women, care providers, and technology experts as stakeholders. To our knowledge, there has been no research on the combination of IPDAS standards and the CeHRes roadmap to develop an eHealth tool to target information about screening for Down syndrome.
authors.affiliation: Research Unit of Gynecology and Obstetrics, Department of Gynecology and Obstetrics, Institute of Clinical Research, Odense University Hospital, University of Southern Denmark, Odense, Denmark. Mette.Maria.Skjoeth@rsyd.dk.
authors.forename: Mette Maria
authors.identifier: http://orcid.org/0000-0002-3528-4619
authors.initials: MM
authors.lastname: Skjøth
authors.forename: Helle Ploug
authors.identifier: http://orcid.org/0000-0002-5075-8739
authors.initials: HP
authors.lastname: Hansen
authors.forename: Eva
authors.identifier: http://orcid.org/0000-0002-5894-7243
authors.initials: E
authors.lastname: Draborg
authors.forename: Claus Duedal
authors.identifier: http://orcid.org/0000-0002-6637-0392
authors.initials: CD
authors.lastname: Pedersen
authors.forename: Ronald F
authors.identifier: http://orcid.org/0000-0001-7906-2826
authors.initials: RF
authors.lastname: Lamont
authors.forename: Jan Stener
authors.identifier: http://orcid.org/0000-0003-2254-1660
authors.initials: JS
authors.lastname: Jørgensen
keywords: Web-based intervention; decision making; decision support intervention; development; eHealth tool; informed choice; pregnancy; prenatal diagnosis; telemedicine