Prenatal screening of Down Syndrome: elaboration of an information document for pregnant women
Résumé
Context . All pregnant women should be informed of the possibility of a prenatal screening for Down
syndrome. The underlying reasons for performing such screening are complex and often misunderstood.
We wanted to draw up an information leaflet on prenatal screening for Down syndrome, which would
be given to pregnant women by caregivers. The leaflet was intended to improve the understanding of
patients on the prenatal screening for Down syndrome in order to help them making an informed
decision.
Method . The drawing up of the leaflet followed the recommended methodology of the French
National Authority for Health: 1) drafting of a first version and improvement threw a working group
composed by researchers, doctors and patients; 2) assessment of the information leaflet by caregivers;
3) proofreading of the documents by linguists.
Results . At the end of the first step, professionals and users prepared two documents: a leaflet for the
use of patients and a diagram for support in the consultation. In the second step, these two documents
were assessed by 27 professionals (midwives, general practitioners and obstetricians). These profession-
als sub- mitted the documents to patients during consultations. Changes were made to the documents.
In the third step, a team of linguists improved the use of words and sentencing without any changes in
the content.
Discussion . This project allowed the creation of a leaflet providing information on Down syndrome
and prenatal screening. The purposes are to inform women, and avoiding anxiety, encouraging
women and couples to reflect on the process and raise awareness that all stages of the prenatal screen-
ing involve a per- sonal choice. This document should be updated along with the development of new
diagnostic techniques, such as the sampling of circulating fetal DNA in maternal blood.