Information des couples et diagnostic prénatal d'une malformation cérébrale à pronostic incertain : analyse des pratiques

Abstract : Fetal ultrasounds (FU) allow identification of brain malformations; announce of diagnosis and information about prognosis may be difficult when malformation is rare and prognosis uncertain. The aim of this study was to analyze how imaging for prenatal screening is organized and how couples are managed and supported. We concentrated on the procedures used to inform couples: content, method of delivery and consequences. Study amongst large multidisciplinary centers in Paris and the Paris region, by semi-directed interviews using a questionnaire. We showed that it is difficult to standardize the way in which information is supplied before and after the FU; pediatricians (neuropediatrician) are not systematically involved in providing information; uncertainty about prognosis leads more often to abortion. There is a need for multidisciplinary teams including pediatricians to inform, support parents, and to accompany their decision concerning pregnancy.