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.


CONCLUSIONS
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.


CONCLUSIONS
This evaluation may serve as a pilot study for quality monitoring studies at a national level.
Department of Public Health, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, The Netherlands. h.schoonen@erasmusmc.nl
Marleen
M
Schoonen
Hajo
H
Wildschut
Marie-Louise
ML
Essink-Bot
Ingrid
I
Peters
Eric
E
Steegers
Harry
H
de Koning
D000328:Adult; D000704:Analysis of Variance; D003657:Decision Making; D004314:Down Syndrome / Q000175:diagnosis* / Q000517:prevention & control*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007258:Informed Consent / Q000523:psychology*; D008880:Midwifery; D009035:Mothers / Q000523:psychology; D009426:Netherlands; D010865:Pilot Projects; D011159:Population Surveillance; D011247:Pregnancy; D011295:Prenatal Care / Q000379:methods*; D011296:Prenatal Diagnosis / Q000523:psychology*; D011785:Quality Assurance, Health Care; D012042:Registries; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires