The provision of information and informed decision-making on prenatal screening for Down syndrome: A questionnaire- and register-based survey in a non-selected population

Objective: Evaluating the information provision procedure about prenatal screening for Down syndrome, using informed decision-making as a quality-indicator. Methods: Questionnaire- and register-based surveys. Midwives associated with 59 midwifery practices completed process data for 6435 pregnancies. Pregnant women (. n=. 510) completed questionnaires on informed decision-making. Results: Midwives offered information to 98.5% of women; 62.6% of them wished to receive information, of these, 81.9% actually received information. Decision-relevant knowledge was adequate in 89.0% of responding women. Knowledge about Down syndrome was less adequate than knowledge about the screening program. Participants in the screening program had higher knowledge scores on Down syndrome and on the screening program than non-participants. Of the women who intended to participate (35.8%), 3.1% had inadequate knowledge. A total of 75.5% of women made an informed decision; 94.3% of women participating in the screening program, and 64.9% of women not participating. Conclusion: This quality assurance study showed high levels of informed decision-making and a relatively low participation rate in the national screening program for Down syndrome in the Netherlands. Knowledge of the Down syndrome condition needs to be improved. Practice implications: This evaluation may serve as a pilot study for quality monitoring studies at a national level.

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