Patient Perception, Preference and Participation
Non-invasive prenatal screening for trisomy 21: What women want and are willing to pay

https://doi.org/10.1016/j.pec.2013.08.006Get rights and content

Abstract

Objective

To investigate the attitude among pregnant women regarding non-invasive prenatal testing (NIPT) for detecting trisomy 21 (T21) and to quantify their willingness to pay for NIPT.

Methods

A questionnaire was administered to pregnant women who received counselling for first-trimester screening (FTS) in two hospitals and nine midwife practices in the Netherlands.

Results

A total of 147 women completed the questionnaire, yielding a response rate of 43%. If NIPT for detecting T21 were available, 81% stated they would choose to have this test, and 57% of women who elected not to undergo FTS in their current pregnancy would perform NIPT if available. Willingness to pay for NIPT was correlated with age and income, but not education level. The price that participants were willing to pay for NIPT was similar to the current price for FTS.

Conclusion

The pregnant women in our study had a positive attitude regarding NIPT for T21, and more than half of the women who rejected prenatal screening would receive NIPT if available.

Practice implications

Due to the elimination of iatrogenic miscarriage, caregivers should be aware that informed decision-making can change with respect to prenatal screening with the introduction of NIPT.

Introduction

Non-invasive prenatal testing (NIPT) can use cell-free foetal DNA circulating in maternal blood to detect chromosomal trisomy, and NIPT was recently introduced into clinical practice. NIPT has both high sensitivity and high specificity [1].

In the Netherlands, first-trimester screening (FTS) is currently offered to all pregnant women as part of a national antenatal screening programme that is based on the “informed choice” principle, meaning that the individual's decision is voluntary and made with full understanding of the circumstances, including all expected benefits, burdens, risks and available alternatives. Invasive testing using chorion villus sampling (CVS) or amniocentesis is offered when the risk of trisomy is ≥1:200. In the Netherlands, approximately 25% of women elect to receive FTS, which is low compared to other countries, and women over the age of 36 have the right to request CVS and/or amniocentesis.

Decision-making regarding prenatal screening includes preparing for the next step, which is an invasive procedure in the event of increased risk of trisomy 21 (T21, or Down syndrome). At this stage, the decision requires balancing the probability of having a child with T21 against the risk of a procedure-related (iatrogenic) miscarriage. The most frequently cited reason for screening is to gain both knowledge regarding the health of the foetus and reassurance [2]. The principal reasons for declining screening include unfavourable characteristics of the screening test, ethical and/or religious objections, post-testing anxiety or uncertainty, and risks associated with invasive testing [2].

These arguments suggest that if a near 100% accurate, non-invasive test for foetal trisomy were available, women may make different choices regarding prenatal screening. Depending on cost and/or availability, NIPT may eventually replace current screening methods.

Although nearly everyone in the Netherlands has medical insurance, the cost of FTS (approximately €150) is only reimbursed for women ≥36 years of age. We therefore asked whether – and how much – women would be willing to pay for NIPT for T21 with risk-free diagnostic certainty. The price that women are willing to pay might also reflect how women value the test's risk-free diagnostic certainty.

Section snippets

Materials and methods

Data were obtained from questionnaires that were completed by pregnant women. Information regarding prenatal screening for T21 was provided in accordance with current guidelines. The questionnaires were distributed by midwives and doctors following patient counselling for prenatal screening within the patient's first trimester. Questionnaires were distributed to all women in their first trimester, independent of their expressed interest regarding prenatal screening. The women were recruited

Results

In total, 340 women were given a questionnaire and invited to participate in the study, and 147 women (43%) completed and returned the questionnaire.

In total, 79 respondents (54%) opted for FTS in their current pregnancy, 7 respondents (5%) opted for an invasive procedure (all of whom were ≥36 years of age), and 61 respondents (42%) rejected prenatal screening, including 5 respondents who also declined information regarding the availability of prenatal screening.

Forty-eight respondents (33%)

Discussion

This study is the first in which pregnant women were asked in the first trimester whether they would opt for NIPT if it were available. The timing of the questioning regarding a sensitive topic such as FTS is extremely important, as confronting a pregnant woman regarding the uncertainty of her baby's health could change her opinion of FTS. If available, the vast majority (81%) of women in our study indicated that they would choose to undergo NIPT. This positive attitude towards NIPT is

Funding

The study was supported by Foundation IDB.

Acknowledgements

This study was made possible by the following midwife practices and hospitals: Verloskundigepraktijk Katwijk, Verloskundigepraktijk Oegstgeest, Verloskundig Centrum Ijburg, Verloskundigepraktijk Amsterdam Oost, Verloskundigepraktijk Amsterdam, Astrid Limburg Verloskundigen, Verloskundigepraktijk Oostelijke Eilanden, Vroedvrouwen Ruyschstraat, Verloskundigen Van Swinden, Onze Lieve Vrouwe Gasthuis, and Leiden University Medical Centre (Jeanette Mesman).

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