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Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals.
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.
Affiliation
  • Hill M; Genetics and Genomic Medicine, UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
  • Johnson JA; Department of Obstetrics & Gynecology, University of Calgary, Calgary, Alberta, Canada.
  • Langlois S; Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.
  • Lee H; Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.
  • Winsor S; Department of Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
  • Dineley B; Department of Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
  • Horniachek M; Department of Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
  • Lalatta F; Clinical Genetics Unit, Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Milano, Italy.
  • Ronzoni L; Clinical Genetics Unit, Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Milano, Italy.
  • Barrett AN; Department of Obstetrics and Gynaecology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
  • Advani HV; Department of Obstetrics and Gynaecology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
  • Choolani M; Department of Obstetrics and Gynaecology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
  • Rabinowitz R; Department of Obstetrics and Gynecology, Shaare Zedek Medical Centre, Jerusalem, Israel.
  • Pajkrt E; Fetal Medicine Unit, Department of Obstetrics and Gynaecology, Academic Medical Centre, Amsterdam, The Netherlands.
  • van Schendel RV; Department of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
  • Henneman L; Department of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
  • Rommers W; Department of Obstetrics and Gynecology, Fetal Medicine Unit, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands.
  • Bilardo CM; Department of Obstetrics and Gynecology, Fetal Medicine Unit, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands.
  • Rendeiro P; CGC Genetics, Porto, Portugal.
  • Ribeiro MJ; IINFACTS, CESPU, Porto, Portugal.
  • Rocha J; CGC Genetics, Porto, Portugal.
  • Bay Lund IC; IINFACTS, CESPU, Porto, Portugal.
  • Petersen OB; Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark.
  • Becher N; Department of Obstetrics and Gynecology, Aarhus University Hospital, Aarhus, Denmark.
  • Vogel I; Department of Obstetrics and Gynecology, Aarhus University Hospital, Aarhus, Denmark.
  • Stefánsdottir V; Department of Obstetrics and Gynecology, Aarhus University Hospital, Aarhus, Denmark.
  • Ingvarsdottir S; Department of Genetics and Molecular Medicine, Landspitali University Hospital, Reykjavik, Iceland.
  • Gottfredsdottir H; Landspitali, National University Hospital, Reykjavik, Iceland.
  • Morris S; Department of Midwifery, Faculty of Nursing, University of Iceland, Reykjavik, Iceland.
  • Chitty LS; Landspitali, National University Hospital, Reykjavik, Iceland.
Eur J Hum Genet ; 24(7): 968-75, 2016 07.
Article in En | MEDLINE | ID: mdl-26577044
ABSTRACT
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.
Subject(s)

Full text: 1 Database: MEDLINE Main subject: Prenatal Diagnosis / Health Knowledge, Attitudes, Practice / Health Personnel / Down Syndrome / Pregnant Women Type of study: Diagnostic_studies / Prognostic_studies / Qualitative_research Limits: Female / Humans / Male / Pregnancy Country/Region as subject: America do norte / Asia Language: En Journal: Eur J Hum Genet Journal subject: GENETICA MEDICA Year: 2016 Type: Article Affiliation country: United kingdom

Full text: 1 Database: MEDLINE Main subject: Prenatal Diagnosis / Health Knowledge, Attitudes, Practice / Health Personnel / Down Syndrome / Pregnant Women Type of study: Diagnostic_studies / Prognostic_studies / Qualitative_research Limits: Female / Humans / Male / Pregnancy Country/Region as subject: America do norte / Asia Language: En Journal: Eur J Hum Genet Journal subject: GENETICA MEDICA Year: 2016 Type: Article Affiliation country: United kingdom