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

Hill, Melissa; Fisher, Jane; Chitty, Lyn S.; Morris, Stephen

doi:10.1038/gim.2012.68

Cited by 117 publications

(161 citation statements)

References 39 publications

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“…13 The attributes cover key differences between NIPT and invasive tests; accuracy, time of test, risk of miscarriage, and type of information. The associated levels reflect current clinically feasible ranges ( Figure 1a).…”

Section: Questionnaire Designmentioning

confidence: 99%

“…9 DCEs have been used to explore preferences for screening and diagnostic tests for DS, looking at attributes such as miscarriage risk, the timing of the test, and the type of information available from test results. [9][10][11][12][13][14][15] Our previous DCE looking at preferences for prenatal tests with reference to NIPT in the United Kingdom demonstrated that HPs placed greater emphasis on test accuracy, while women prioritised test safety. 13 Here we explore women's and HPs' preferences for key attributes of the current DSS and testing pathway and compare these with attitudes towards NIPT in nine culturally diverse countries with differing healthcare systems.…”

Section: Introductionmentioning

confidence: 99%

“…[9][10][11][12][13][14][15] Our previous DCE looking at preferences for prenatal tests with reference to NIPT in the United Kingdom demonstrated that HPs placed greater emphasis on test accuracy, while women prioritised test safety. 13 Here we explore women's and HPs' preferences for key attributes of the current DSS and testing pathway and compare these with attitudes towards NIPT in nine culturally diverse countries with differing healthcare systems. In addition, we examine the value placed on tests that give more comprehensive information as we move from karyotyping or microarray analysis, which detects trisomies and other pathogenic cytogenetic rearrangements, to NIPT which currently only reliably detects the major trisomies.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2015

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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. INTRODUCTIONMany countries have established prenatal screening programmes for Down syndrome (DS), where an initial screening test is followed by the offer of an invasive diagnostic test for women with a 'high risk' result to allow definitive diagnosis. Non-invasive prenatal testing (NIPT), which analyses cell-free DNA in maternal plasma, is rapidly transforming prenatal testing for DS worldwide. 1 NIPT can be used from 10 weeks in pregnancy to screen for DS with high sensitivity (99.3%) and specificity (99.8%) and can detect other common chromosomal aneuploidies (Trisomy 18, Trisomy 13, and Monosomy X). 2,3 NIPT allows screening for these conditions with much greater specificity than traditional DS screening (DSS) 4 and thereby significantly reduces the need for invasive testing (chorionic villus sampling or amniocentesis) with the associated small miscarriage risk. 5

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Section: Questionnaire Designmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2015

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“…Women seem to place more value on the safety of the test and are prepared to wait longer and accept lower accuracy if the test has no risk of miscarriage, whereas healthcare professionals prefer a test that is more accurate. 12 The aim of this study is to further explore women's attitudes and concerns about NIPT and explore their views on widening the scope of prenatal screening through NIPT. Male partners are often not included in research but as decisions about prenatal testing are preferably made by both partners, and research has shown that men want to be involved in this decision-making process, 13 the views of male partners were also explored in this study.…”

Section: Introductionmentioning

confidence: 99%

“…Male partners are often not included in research but as decisions about prenatal testing are preferably made by both partners, and research has shown that men want to be involved in this decision-making process, 13 the views of male partners were also explored in this study. Most studies about pregnant women's attitudes towards NIPT have been based on quantitative methods, 9,10,12,14 which have the advantage of being able to include a large study sample. However, they lack a thorough, in-depth analysis of these attitudes.…”

Section: Introductionmentioning

confidence: 99%

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

et al. 2014

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Non-invasive prenatal testing (NIPT) and its potential to test for multiple disorders has received much attention. This study explores attitudes of women and men towards NIPT, and their views on widening the scope of prenatal testing in a country with a low uptake of prenatal screening (The Netherlands). Five focus groups with low-risk pregnant women (n ¼ 28), three focus groups with men (n ¼ 19) and 13 interviews with high-and low-risk pregnant women were conducted. Participants felt that current prenatal screening has great disadvantages such as uncertain results and risk of miscarriage from follow-up diagnostics. Characteristics of NIPT (accurate, safe and early testing) could therefore diminish these disadvantages of prenatal screening and help lower the barrier for participation. This suggests that NIPT might allow couples to decide about prenatal testing based mostly on their will to test or not, rather than largely based on fear of miscarriage risk or the uncertainty of results. The lower barrier for participation was also seen as a downside that could lead to uncritical use or pressure to test. Widening the scope of prenatal testing was seen as beneficial for severe disorders, although it was perceived difficult to determine where to draw the line. Participants argued that there should be a limit to the scope of NIPT, avoiding testing for minor abnormalities. The findings suggest that NIPT could enable more meaningful decision-making for prenatal screening. However, to ensure voluntary participation, especially when testing for multiple disorders, safeguards on the basis of informed decision-making will be of utmost importance. INTRODUCTIONNon-invasive prenatal testing (NIPT) allows detection of chromosomal aneuploidies in the foetus by using circulating cell-free foetal DNA (cffDNA) in the plasma of pregnant women. 1 This technique makes it possible to detect foetal trisomies 21, 13 and 18 as early as 9 weeks into the pregnancy, and perhaps even earlier. 2 As the procedure of NIPT consists of only drawing a blood sample, it eliminates the risk of miscarriage associated with invasive diagnostic procedures, that is, chorionic villus sampling (CVS) and amniocentesis. Consequently, NIPT assures both earlier and safer prenatal testing, although diagnostic confirmation of abnormal NIPT results by invasive testing is still required due to the chance of false positive test results. 3 In 2010, Lo et al 4 showed that it is possible to deduce the entire genomic sequence of a foetus through NIPT, implying that NIPT could identify a much wider range of genetic disorders in the future. These major developments in the field of prenatal testing are generating a great amount of debate regarding the potential impact, benefits and drawbacks of NIPT. Greely 5 , for example, provides a summary of the ethical questions that have been raised with regard to the implications of NIPT on the current prenatal screening setting and

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Women’s Attitudes Toward Invasive and Noninvasive Testing When Facing a High Risk of Fetal Down Syndrome

et al. 2019

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Key Points Question What are the attitudes and decision making concerning invasive and noninvasive prenatal testing in women at high risk of fetal Down syndrome? Findings In a survey study of 2436 pregnant women in France participating in a randomized clinical trial, 4 clusters were identified with different attitudes toward risk taking and extent of information seeking. Decision making was in line with attitudes, and clinical and socioeconomic factors were likely associated with the attitudes identified. Meaning Aversion to ambiguity generated by incomplete information from noninvasive testing as well as aversion to risk of pregnancy loss due to invasive testing played a major role in shaping attitudes and decision making; therefore, pregnant women should receive extensive information on targeted abnormalities by both tests to aid informed decision making.

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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

Cited by 117 publications

References 39 publications

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

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

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

Women’s Attitudes Toward Invasive and Noninvasive Testing When Facing a High Risk of Fetal Down Syndrome

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