Information for patients undergoing a prenatal diagnosis

Abstract 

Objectives

Lack of information is a frequent complaint with regard to physicians dealing with prenatal diagnosis (PD). The aim of the study was to find out how information on PD was perceived by patients and if they considered that they had been correctly informed by their physicians.

Methods

We conducted a prospective study in Lariboisière Hospital (Paris) with 86 patients undergoing prenatal diagnosis between 2001 and 2003. A 23-item questionnaire was given to patients after delivery or termination of pregnancy (TP).

Results

Fifty patients out of 86 answered the questionnaire. Twelve patients out of 50 underwent a TP. Information on foetal anomaly was insufficient for 11 patients out of 50 (22%). Some patients found the information too technical; others would like to see photos to illustrate the anomalies and the possible surgical repairs to be performed. Information was insufficient for one in four patients concerning maternal serum screening for Down's syndrome. Information before amniocentesis was considered sufficient by 9 out of 10 patients. Information on the risks of TP was not given or not understood by 10 out of 12 patients.

Conclusion

Information on prenatal diagnosis could be improved by using simple and accessible language, supported by written documents and photos for certain anomalies. More information should be given in cases of abstract anomalies and should be adapted to the social, ethnic and cultural background of the patient.

Keywords: Information on prenatal diagnosis, Termination of pregnancy, Maternal serum screening, Ethics