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血友病的携带者检测与产前诊断——应用及心理影响

Carrier testing and prenatal diagnosis of haemophilia--utilisation and psychological consequences.

作者信息

Tedgård U

机构信息

Department of Paediatrics, University of Lund, Malmö University Hospital, Sweden.

出版信息

Haemophilia. 1998 Jul;4(4):365-9. doi: 10.1046/j.1365-2516.1998.440365.x.

DOI:10.1046/j.1365-2516.1998.440365.x
PMID:9873756
Abstract

Attitudes towards prenatal diagnosis, and abortion vary widely between different countries, religions, cultures and over time. Carrier testing and prenatal diagnosis (PD) of haemophilia have become an integrated part of the comprehensive care for haemophilia in Sweden as well as in many other countries. Almost all carriers are interested in carrier testing if they are aware of the possibility. With the development of PD by chorionic villus sampling in the first trimester, the method became acceptable for many carriers, and it has in Sweden actually had an effect on the incidence of haemophilia in the 1990s. The use of PD is more common among women who perceive haemophilia as a very serious disease and who have a positive attitude towards legal abortion. The main reason for carriers not to use PD was that they do not find haemophilia to be a sufficiently serious disorder to justify an abortion. Women and their spouses are under a great deal of psychological pressure in association with the PD procedure, and the psychological consequences of having to terminate a pregnancy are long-lasting. At follow-up, about 6 years after PD and abortion, these women, however, do not have more signs of psychological distress than women without PD experience. Nevertheless, they must be offered qualified assistance both before and after PD as well as adequate follow-up after an abortion to help them cope with the emotional strain they are under.

摘要

不同国家、宗教、文化之间以及随着时间推移,对产前诊断和堕胎的态度差异很大。在瑞典以及许多其他国家,血友病的携带者检测和产前诊断已成为血友病综合护理的一部分。几乎所有携带者如果知道有这种可能性,都会对携带者检测感兴趣。随着孕早期绒毛取样产前诊断方法的发展,该方法为许多携带者所接受,并且在瑞典实际上对20世纪90年代血友病的发病率产生了影响。产前诊断在那些认为血友病是非常严重的疾病且对合法堕胎持积极态度的女性中使用更为普遍。携带者不进行产前诊断的主要原因是他们认为血友病不够严重,不足以成为堕胎的理由。女性及其配偶在产前诊断过程中承受着巨大的心理压力,而不得不终止妊娠的心理后果是持久的。然而,在随访中,即产前诊断和堕胎约6年后,这些女性并没有比没有产前诊断经历的女性表现出更多的心理困扰迹象。尽管如此,在产前诊断前后以及堕胎后都必须为她们提供专业帮助以及充分的随访,以帮助她们应对所承受的情感压力。

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Carrier testing and prenatal diagnosis of haemophilia--utilisation and psychological consequences.血友病的携带者检测与产前诊断——应用及心理影响
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