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血友病携带者检测和产前诊断的长期心理影响:与对照组比较

Long-term psychological effects of carrier testing and prenatal diagnosis of haemophilia: comparison with a control group.

作者信息

Tedgård U, Ljung R, McNeil T F

机构信息

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

出版信息

Prenat Diagn. 1999 May;19(5):411-7.

PMID:10360508
Abstract

The long-term psychological effects resulting from carrier testing and prenatal diagnosis (PD) of haemophilia were evaluated by comparing mental symptomatology scores (Symptom Check List, SCL-90) for 50 carriers of haemophilia who had undergone PD about five years earlier, 55 carriers who had not undergone PD and 262 control women who were not carriers. All of the women had children. Carrier testing for haemophilia per se and in combination with PD does not appear to have negative long-term psychological effects. A low tendency for somatization seems to be a factor characteristic of carriers considering PD for haemophilia and it was particularly salient when carriers had to consider the more invasive late PD procedures (amniocentesis and fetal blood sampling). Women who performed late PD appeared to represent a positive selection of carriers for whom a good sense of coherence and social support protected them from negative long-term psychological effects. It is reassuring that early PD by CVS, which is the current method of choice for PD for haemophilia, did not appear to have negative long-term psychological effects, even for women who had had an early abortion following PD.

摘要

通过比较约五年前接受过产前诊断(PD)的50名血友病携带者、55名未接受过PD的携带者以及262名非携带者对照女性的精神症状评分(症状自评量表,SCL - 90),评估了血友病携带者检测和产前诊断所产生的长期心理影响。所有女性均育有子女。血友病携带者检测本身以及与产前诊断相结合似乎不会产生负面的长期心理影响。躯体化倾向较低似乎是考虑进行血友病产前诊断的携带者的一个特征因素,当携带者不得不考虑更具侵入性的晚期产前诊断程序(羊膜穿刺术和胎儿血样采集)时,这一因素尤为突出。进行晚期产前诊断的女性似乎是携带者中的一个积极选择群体,她们良好的连贯感和社会支持使她们免受负面的长期心理影响。令人放心的是,作为目前血友病产前诊断的首选方法,绒毛取样早期产前诊断似乎不会产生负面的长期心理影响,即使对于产前诊断后早期流产的女性也是如此。

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"It was a lot Tougher than I Thought It would be". A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier.“这比我想象的要难得多”。一项关于血友病携带者身份变化本质的定性研究。
J Genet Couns. 2017 Dec;26(6):1324-1332. doi: 10.1007/s10897-017-0112-9. Epub 2017 May 26.