4.6 Article

Women's and health professionals' preferences for prenatal tests for Down syndrome: a discrete choice experiment to contrast noninvasive prenatal diagnosis with current invasive tests

Journal

GENETICS IN MEDICINE
Volume 14, Issue 11, Pages 905-913

Publisher

NATURE PUBLISHING GROUP
DOI: 10.1038/gim.2012.68

Keywords

discrete choice experiment; Down syndrome; non-invasive prenatal diagnosis

Funding

  1. National Institute for Health Research (NIHR) [RP-PG-0707-10107]
  2. NIHR Comprehensive Clinical Research Network
  3. Great Ormond Street Hospital Children's Charity
  4. NIHR Biomedical Research Centre at University College London
  5. National Institutes of Health Research (NIHR) [RP-PG-0707-10107] Funding Source: National Institutes of Health Research (NIHR)
  6. Great Ormond Street Hospital Childrens Charity [V1253] Funding Source: researchfish
  7. National Institute for Health Research [RP-PG-0707-10107] Funding Source: researchfish

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Purpose: To compare the preferences of women and health professionals for key attributes of noninvasive prenatal diagnosis for Down syndrome relative to current invasive tests. Methods: A questionnaire incorporating a discrete choice experiment was used to obtain participants' stated preference for diagnostic tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and provision of information about Down syndrome only or Down syndrome and other conditions. Women and health professionals were recruited from five maternity services in England and a patient support group. Results: Questionnaires from 335 women and 181 health professionals were analyzed. Safe tests, conducted early in pregnancy, with high accuracy and information about Down syndrome and other conditions were preferred. The key attribute affecting women's preferences for testing was no risk of miscarriage, whereas for health professionals it was accuracy. Conclusions: Policies for implementing noninvasive prenatal diagnosis must consider the differences between women's and health professionals' preferences to ensure the needs of all stakeholders are met. Women's strong preference for tests with no risk of miscarriage demonstrates that consideration for safety of the fetus is paramount in decision making. Effective pretest counseling is therefore essential to ensure women understand the possible implications of results.

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