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

  • Melissa Hill
  • , Jo Ann Johnson
  • , Sylvie Langlois
  • , Hyun Lee
  • , Stephanie Winsor
  • , Brigid Dineley
  • , Marisa Horniachek
  • , Faustina Lalatta
  • , Luisa Ronzoni
  • , Angela N. Barrett
  • , Henna V. Advani
  • , Mahesh Choolani
  • , Ron Rabinowitz
  • , Eva Pajkrt
  • , Rachèl V. Van Schendel
  • , Lidewij Henneman
  • , Wieke Rommers
  • , Caterina M. Bilardo
  • , Paula Rendeiro
  • , Maria João Ribeiro
  • José Rocha, Ida Charlotte Bay Lund, Olav B. Petersen, Naja Becher, Ida Vogel, Vigdis Stefánsdottir, Sigrun Ingvarsdottir, Helga Gottfredsdottir, Stephen Morris, Lyn S. Chitty

Rannsóknarafurð: Framlag til fræðitímaritsGreinritrýni

Útdráttur

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.

Upprunalegt tungumálEnska
Síður (frá-til)968-975
Síðufjöldi8
FræðitímaritEuropean Journal of Human Genetics
Bindi24
Númer tölublaðs7
DOI
ÚtgáfustaðaÚtgefið - 1 júl. 2016

Athugasemd

Funding Information: We are grateful to the women and HPs who participated in the study. We also thank the local principal investigators and researchers at each hospital for their help with recruitment. This manuscript presents independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme (RP-PG-0707-10107) (the & quot;RAPID" project), the NIHR Comprehensive Research Network and the NIHR Biomedical Research Centre at Great Ormond Street Hospital for Children. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. Publisher Copyright: © 2016 Macmillan Publishers Limited. All rights reserved.

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