Patient Perception, Preference and ParticipationNon-invasive prenatal screening for trisomy 21: What women want and are willing to pay
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).
References (21)
- et al.
On hypothetical bias and calibration in cost-benefit studies
Health Policy
(2000) - et al.
Favorable attitudes toward testing for chromosomal abnormalities via analysis of fetal cells in maternal blood
Genet Med
(2001) - et al.
Ethnic and socio-economic differences in uptake of prenatal diagnostic tests for Down's syndrome
Eur J Obstet Gynecol Reprod Biol
(2010) - et al.
Are pregnant women making informed choices about prenatal screening?
Genet Med
(2005) - et al.
Accuracy of noninvasive detection of fetal trisomy 21 in maternal blood: a systematic review
Fetal Diagn Ther
(2012) - et al.
Accepting or declining the offer of prenatal screening for congenital defects: test uptake and women's reasons
Prenat Diagn
(2005) Measurement of feelings using visual analogue scales
Proc R Soc Med
(1969)- et al.
Assessing community values in health care: is the willingness to pay method feasible?
Health Care Anal
(1997) Construction of the contingent valuation market in health care: a critical assessment
Health Econ
(2003)- et al.
Comparing welfare estimates from payment card contingent valuation and discrete choice experiments
Health Econ
(2009)