[Parent's information and prenatal diagnosis of cerebral malformation with an uncertain prognosis]

Arch Pediatr. 2004 May;11(5):423-8. doi: 10.1016/j.arcped.2004.02.019.
[Article in French]

Abstract

Fetal ultrasounds examinations allow identification of brain malformations; announce of diagnosis and information about prognosis may be difficult when malformation is rare and prognosis uncertain.

Objectives: In this study we tried to analyze how fetal imaging for prenatal screening was organized and how couples were managed and supported.

Methods: We focused on the procedures used to inform couples: content, method of delivery and consequences. A referent physician in each large multidisciplinary center for prenatal diagnosis in Paris area was questioned by semi-directed interview.

Results: Our study showed that it is difficult to standardize the way in which information is supplied before and after fetal ultrasounds examination; uncertainty about prognosis led more often to abortion.

Conclusion: Thus, couples should have clear and complete information provided by a multidisciplinary team including specialists particularly concerned by the malformation (neuropediatrician and/or neurosurgeon)--moreover when prognosis is uncertain, in order to support them, and to accompany their decision concerning pregnancy.

Publication types

  • English Abstract
  • Multicenter Study

MeSH terms

  • Adult
  • Brain / abnormalities*
  • Brain / embryology
  • Decision Making
  • Female
  • Health Care Surveys
  • Humans
  • Middle Aged
  • Patient Education as Topic*
  • Physician-Patient Relations
  • Practice Patterns, Physicians' / statistics & numerical data
  • Pregnancy
  • Prognosis
  • Ultrasonography, Prenatal