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预后不确定的脑畸形产前诊断:一项关于夫妻信息及对妊娠影响的研究

Prenatal diagnosis of cerebral malformation with an uncertain prognosis: a study concerning couple's information and consequences on pregnancy.

作者信息

Moutard Marie-Laure, Moutel Grégoire, François Irène, Fauriel Isabelle, Feingold Josué, Ponsot Gérard, Hervé Christian

机构信息

Service de Neuropédiatrie, Hôpital saint Vincent de Paul, 82, avenue Denfert-Rochereau, 75674, Paris cedex 14, France.

出版信息

Ann Genet. 2004 Jan-Mar;47(1):41-51. doi: 10.1016/j.anngen.2003.10.004.

DOI:10.1016/j.anngen.2003.10.004
PMID:15050873
Abstract

UNLABELLED

Fetal ultrasound (FU) is used during almost all pregnancies and makes a large contribution to the identification of fetal malformation. It is particularly difficult to announce a malformation, particularly those affecting the brain, because there are often doubts concerning both the diagnosis and the prognosis.

AIM

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.

METHOD

Study amongst large multidisciplinary centers in Paris and the Paris region, by semi-directed interviews using a questionnaire.

RESULTS

We showed that it is difficult to standardize the way in which information is supplied before and after the examination, and that doctors tend to recommend abortion when the prognosis is uncertain.

DISCUSSION

These results provide information that will help decision-making concerning a standardized procedure allowing couples to benefit from all the capacities of prenatal screening, particularly when the diagnosis and prognosis are uncertain. There is a need for multidisciplinary teams to support and to accompany the decision concerning whether to have an abortion or to continue the pregnancy.

摘要

未标注

几乎所有孕期都会进行胎儿超声检查(FU),这对胎儿畸形的识别有很大贡献。宣布胎儿畸形,尤其是那些影响大脑的畸形,特别困难,因为在诊断和预后方面往往存在疑问。

目的

本研究的目的是分析产前筛查成像如何组织,以及如何管理和支持夫妇。我们专注于用于告知夫妇的程序:内容、传递方式和后果。

方法

通过使用问卷进行半定向访谈,在巴黎及巴黎地区的大型多学科中心开展研究。

结果

我们发现,检查前后提供信息的方式难以标准化,而且当预后不确定时,医生往往倾向于建议堕胎。

讨论

这些结果提供了有助于做出关于标准化程序决策的信息,使夫妇能够受益于产前筛查的所有能力,尤其是在诊断和预后不确定时。需要多学科团队来支持并陪伴做出是否堕胎或继续妊娠的决定。

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Prenatal diagnosis of cerebral malformation with an uncertain prognosis: a study concerning couple's information and consequences on pregnancy.预后不确定的脑畸形产前诊断:一项关于夫妻信息及对妊娠影响的研究
Ann Genet. 2004 Jan-Mar;47(1):41-51. doi: 10.1016/j.anngen.2003.10.004.
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Prenatal diagnosis: From policy to practice. Two distinct ways of managing prognostic uncertainty and anticipating disability in Brazil and in France.产前诊断:从政策到实践。巴西和法国处理预后不确定性及预测残疾的两种不同方式。
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A normal second-trimester ultrasound does not exclude intracranial structural pathology--a case of hemimegalencephaly.孕中期超声检查正常不能排除颅内结构病变——1例半侧巨脑症病例
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