Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals.

• Published in: European Journal of Human Genetics
• Main Authors: Hill, Melissa, Johnson, Jo-Ann, Langlois, Sylvie, Lee, Hyun, Winsor, Stephanie, Dineley, Brigid, Horniachek, Marisa, Lalatta, Faustina, Ronzoni, Luisa, Barrett, Angela N, Advani, Henna V, Choolani, Mahesh, Rabinowitz, Ron, Pajkrt, Eva, van Schendel, Rachèl V, Henneman, Lidewij, Rommers, Wieke, Bilardo, Caterina M, Rendeiro, Paula, Ribeiro, Maria João, Rocha, José, Bay Lund, Ida Charlotte, Petersen, Olav B, Becher, Naja, Vogel, Ida, Stefánsdottir, Vigdis, Ingvarsdottir, Sigrun, Gottfredsdottir, Helga, Morris, Stephen, Chitty, Lyn S
• Other Authors: 1 UCL Inst Child Hlth, Genet & Genom Med, Level 5,Barclay House,37,Queen Sq, London WC1N 3BH, England 2 Great Ormond St Hosp Children NHS Fdn Trust, Level 5,Barclay House,37,Queen Sq, London WC1N 3BH, England 3 Univ Calgary, Dept Obstet & Gynecol, Calgary, AB, Canada 4 Univ British Columbia, Dept Med Genet, Vancouver, BC, Canada 5 McMaster Univ, Dept Obstet & Gynecol, Hamilton, ON, Canada 6 Fdn IRCCS Ca Granda Osped Maggiore Policlin, Clin Genet Unit, Milan, Italy 7 Natl Univ Singapore, Yong Loo Lin Sch Med, Dept Obstet & Gynaecol, Singapore 117595, Singapore 8 Shaare Zedek Med Ctr, Dept Obstet & Gynecol, Jerusalem, Israel 9 Univ Amsterdam, Acad Med Ctr, Dept Obstet & Gynaecol, Fetal Med Unit, Meibergdreef 9, NL-1105 AZ Amsterdam, Netherlands 10 Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands 11 Univ Groningen, Univ Med Ctr Groningen, Fetal Med Unit, Dept Obstet & Gynecol, Groningen, Netherlands 12 CGC Genet, Oporto, Portugal 13 CESPU, IINFACTS, Oporto, Portugal 14 Aarhus Univ Hosp, Dept Clin Genet, DK-8000 Aarhus, Denmark 15 Aarhus Univ Hosp, Dept Obstet & Gynecol, DK-8000 Aarhus, Denmark 16 Landspitali Univ Hosp, Dept Genet & Mol Med, Reykjavik, Iceland Organization-Enhanced Name(s) Landspitali National University Hospital 17 Natl Univ Hosp Reykjavik, Landspitali, Reykjavik, Iceland 18 Univ Iceland, Fac Nursing, Dept Midwifery, Reykjavik, Iceland 19 UCL, Res Dept Appl Hlth Res, London, England
• Format: Article in Journal/Newspaper
• Language: English
• Published: Nature Publishing Group 2016
• Subjects: Downs heilkenni; Foreldrar; Meðganga; Fóstureyðingar; NAF12; MIW12; Down Syndrome/diagnosis*; Health Personnel/psychology*; Patient Preference*; Pregnancy; Prenatal Diagnosis; Reproducibility of Results; Surveys and Questionnaires; Canada; Iceland
• Online Access: http://hdl.handle.net/2336/617892; https://doi.org/10.1038/ejhg.2015.249

To access publisher's full text version of this article click on the hyperlink at the bottom of the page Non-invasive prenatal testing is increasingly available worldwide and stakeholder viewpoints are essential to guide implementation. Here we compare the preferences of women and health professionals from nine different countries towards attributes of non-invasive and invasive prenatal tests for Down syndrome. A discrete choice experiment was used to obtain participants' stated preference for prenatal tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and type of information. Pregnant women and health professionals were recruited from Canada, Denmark, Iceland, Israel, Italy, the Netherlands, Portugal, Singapore, and the United Kingdom. A total of 2666 women's and 1245 health professionals' questionnaires were included in the analysis. Differences in preferences were seen between women and health professionals within and between countries. Overall, women placed greater emphasis on test safety and comprehensive information than health professionals, who emphasised accuracy and early testing. Differences between women's and health professionals' preferences are marked between countries. Varied approaches to implementation and service delivery are therefore needed and individual countries should develop guidelines appropriate for their own social and screening contexts. National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme RP-PG-0707-10107 NIHR Comprehensive Research Network NIHR Biomedical Research Centre at Great Ormond Street Hospital for Children