Women's and healthcare professionals' preferences for prenatal testing: a discrete choice experiment

Beulen, Lean; Grutters, Janneke P.C.; Faas, Brigitte H. W.; Feenstra, Ilse; Groenewoud, Hans; Vugt, J.M.G. van; Bekker, Mireille N.

doi:10.1002/pd.4571

Cited by 41 publications

(52 citation statements)

References 12 publications

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“…Both findings are in line with previous studies conducted in the Netherlands, where many women make an informed choice not to participate in prenatal screening, and some would decline prenatal testing for chromosomal abnormalities even when offered a (near-) perfect prenatal test. [12][13][14]21 Other studies evaluating the effect of patient decision aids on decisionmaking regarding prenatal testing for fetal chromosomal abnormalities have been published. Previous studies have reported on the application of booklets with worksheets, 22,23 information films, 24,25 and interactive computer programmes.…”

Section: Discussionmentioning

confidence: 99%

The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial

et al. 2016

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Early in pregnancy women and their partners face the complex decision on whether or not to participate in prenatal testing for fetal chromosomal abnormalities. Several studies show that the majority of pregnant women currently do not make informed decisions regarding prenatal testing. As the range of prenatal tests is expanding due to the development of new techniques such as non-invasive prenatal testing (NIPT), autonomous reproductive decision-making is increasingly challenging. In this study, a randomised controlled trial was conducted to evaluate the effect of a web-based multimedia decision aid on decision-making regarding prenatal testing. The decision aid provided both written and audiovisual information on prenatal tests currently available, that is, prenatal screening by first-trimester combined testing, NIPT and invasive diagnostic testing through chorionic villus sampling or amniocentesis. Furthermore, it contained values clarification exercises encouraging pregnant women to reflect on the potential harms and benefits of having prenatal tests performed. The use of the decision aid improved informed decisionmaking regarding prenatal testing. Of pregnant women allocated to the intervention group (n = 130) 82.3% made an informed choice compared with 66.4% of women in the control group (n = 131), P = 0.004. As the vast majority of pregnant women made decisions consistent with their attitudes towards having prenatal testing performed, this improvement in informed decisionmaking could be attributed mainly to an increase in decision-relevant knowledge. This study shows that the implementation of a web-based multimedia decision aid directly facilitates the ultimate goal of prenatal testing for fetal chromosomal abnormalities, which is enabling informed autonomous reproductive choice. European Journal of Human Genetics (2016) 24, 1409-1416; doi:10.1038/ejhg.2016.39; published online 18 May 2016 INTRODUCTIONThe main purpose of prenatal testing for fetal chromosomal abnormalities is facilitating autonomous reproductive decision-making for pregnant women and their partners, rather than achieving high uptake rates or prevention of children with chromosomal abnormalities being born. 1,2 In order to achieve autonomous reproductive decisionmaking, the choice to accept or decline prenatal testing should be informed. An informed choice is made when a woman has adequate decision-relevant knowledge and when her participation or nonparticipation is consistent with her values and attitudes towards undergoing prenatal testing. 3,4 It requires healthcare professionals to provide accurate, comprehensive and neutral information about the options available. Subsequently, the pregnant woman has to be encouraged to integrate this knowledge with her personal values when reflecting on the possible implications of having prenatal testing performed. Most international evaluations show that the majority of pregnant women currently do not make informed decisions regarding prenatal testing. 5,6 With the development and introduction of n...

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Section: Discussionmentioning

confidence: 99%

The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial

et al. 2016

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“…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%

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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“…Overall, we found that when making decisions regarding prenatal testing, women in Singapore, like those in other countries, (21)(22)(23)28) place greater emphasis on test safety, while HPs place higher value on accuracy and early testing. We found that women who had a previous miscarriage, were aged ≥ 35 years or knew a child with DS gave higher priority to a test that does not carry a risk of miscarriage.…”

Section: Discussionmentioning

confidence: 89%

“…Previous research using DCEs to examine preferences for prenatal tests, including NIPT, has shown that the main concern of women is the safety of their baby, whereas the primary consideration for HPs is the accuracy of the test. (21,22) A DCE comparing the preferences of women and HPs from nine different countries, including Singapore, has recently been published. (23) Herein, we report detailed fi ndings of the preferences of women and HPs for NIPT from the Singapore cohort, with the aim of gaining an understanding of the challenges women and HPs may face upon widespread implementation of the test in Singapore.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of preferences of women and healthcare professionals in Singapore for implementation of noninvasive prenatal testing for Down syndrome

Barrett¹,

Advani²,

Chitty³

et al. 2017

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INTRODUCTIONInvasive prenatal diagnosis (IPD) has long been used to prenatally diagnose Down syndrome (DS), but it is associated with a small risk of miscarriage. Noninvasive prenatal testing (NIPT) is a highly sensitive screening test using cell-free DNA in maternal blood for detection of DS without the risk of miscarriage, but it confers a small risk of false-positive and false-negative results. The implementation of these procedures into clinical practice requires an understanding of stakeholder preferences.METHODS A total of 69 health professionals (HPs) and 301 women took part in a discrete choice experiment (DCE) in which preferences for four prenatal test attributes -accuracy, time of results, risk of miscarriage and amount of information provided -were assessed. Conditional logit regression was used to analyse the data. Data on demographics and ranked preferences for test attributes was collected, and a direct choice question regarding NIPT, IPD or neither test was posed to participants. RESULTSThe women showed a preference for test safety, whereas HPs prioritised test accuracy above all other attributes.When offered a direct choice of NIPT, IPD or neither test, women aged 35 years and older, those with previous miscarriage or who knew a child with DS were more likely to choose NIPT. Chinese women preferred NIPT, whereas Indian women preferred IPD.CONCLUSION Our data highlights the need for patient-specifi c counselling, taking into account previous experiences and cultural factors. Since women and HPs prioritise different test attributes, it is essential that HPs recognise these differences in order to provide non-biased counselling.

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Women's and healthcare professionals' preferences for prenatal testing: a discrete choice experiment

Abstract: Pregnant women and healthcare professionals differ significantly in their preferences regarding prenatal test characteristics. Healthcare professionals should take these differences into consideration when counseling pregnant women on prenatal testing.

Cited by 41 publications

References 12 publications

The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial

The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial

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

Evaluation of preferences of women and healthcare professionals in Singapore for implementation of noninvasive prenatal testing for Down syndrome

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