NATION-WIDE ASSESSMENT OF INFORMED DECISION-MAKING IN PRENATAL SCREENING IN THE NETHERLANDS

Purpose:

To evaluate the quality of the information provision in prenatal screening in the Netherlands, by assessing the level of informed decision making about whether to participate (or not) in the first-trimester screening for Down’s syndrome and the second-trimester ultrasound for fetal anomalies.

Method:

All 659 obstetrical care practices qualified for prenatal screening were asked to participate. In total 12,165 pregnant women were asked by their obstetrician to participate and fill out an on-line or paper questionnaire. For each screening, the questionnaire contained items about knowledge, attitude towards screening participation and intention to participate, based on the multi-dimensional measure of informed choice. Choices are informed if based on sufficient decision-relevant knowledge and consistent with the decision-maker’s attitude towards participating in the screening.

Result:

72% of all practices participated. Of the 11,262 women who agreed to participate, 7518 completed the questionnaire (67%). Most women held positive attitudes towards undergoing the second-trimester ultrasound for fetal anomalies (90%), whereas most had negative feelings towards participating in the Down’s syndrome screening (81%). Decision-relevant knowledge of Down’s syndrome screening was sufficient among 78% pregnant women, although 43% did not know that all children with Down Syndrome have an intellectual disability. 84% had sufficient knowledge of the ultrasound screening, but knowledge of the chance of having an affected child at birth was overestimated by 53% of the women.

   Informed choices were found among 76% in Down’s syndrome screening and 87% in the second-trimester ultrasound screening. Among non-informed choices (1,278) in Down’s syndrome screening, 1,056 were due to insufficient knowledge (83%). In ultrasound screening, the 665 uninformed choices were partly caused by insufficient knowledge, partly by inconsistencies between attitude and screening behavior.

Conclusion:

Most women had sufficient knowledge about both prenatal  screening programs. In both screenings, most women seem to act according to their attitude towards participation in the screening. As a result, most women made an informed choice, but informed choices in first-trimester Down’s syndrome screening were less frequent than in second-trimester ultrasound. Uninformed choices appear to be predominantly due to insufficient knowledge, especially in Down’s syndrome screening. Informed decision making in prenatal screening may further increase by taking account of the current knowledge gaps among pregnant women. Reconsidering the content, framing and/or timing of the information may be needed.