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尽管进行了产前检测,但重型β地中海贫血仍持续出现的相关因素:一项横断面调查。

Factors associated with continuing emergence of β-thalassemia major despite prenatal testing: a cross-sectional survey.

作者信息

Al Sabbah Haleama, Khan Sarah, Hamadna Abdallah, Abu Ghazaleh Lamia, Dudin Anwar, Karmi Bashar Adnan

机构信息

College of Natural and Health Sciences, Zayed University, Dubai, UAE.

Faculty of Medicine, An-Najah National University, Nablus, Palestine.

出版信息

Int J Womens Health. 2017 Sep 25;9:673-679. doi: 10.2147/IJWH.S141936. eCollection 2017.

DOI:10.2147/IJWH.S141936
PMID:29026336
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5626377/
Abstract

PURPOSE

Health care initiatives focusing on prenatal testing and premarital genetic screening aiming to reduce the incidence of β-thalassemia have emerged during the last decade. In Palestine, 4% of the population are known thalassemia carriers with new cases continuing to appear despite the availability of prenatal testing. This study aims to identify factors that influence the decision to retain or abort fetuses affected by β-thalassemia in Palestine.

METHODS

Convenience sampling was used to select 32 women (72 fetuses) who were at risk of having a baby with β-thalassemia. A questionnaire on prenatal testing, test results, pregnancy outcomes, and factors influencing the decision to terminate the pregnancy were used for this cross-sectional study. The data were analyzed using SPSS version 17.

RESULTS

Among the fetuses screened, 36 (50%) were thalassemia carriers and 20 (28%) had β-thalassemia; 17 (85%) affected fetuses were aborted. Religious beliefs were the most cited reason for opposing abortion while prior experience with β-thalassemia patients and awareness programs promoted abortions. Mothers who opted to retain an affected fetus had modest educational attainment. Higher educational level was significantly associated with the decision to abort an affected fetus (<0.05).

CONCLUSION

A religious consensus is needed on the abortion of fetuses affected by β-thalassemia. Improving female education and increasing awareness on thalassemia could help reduce the incidence of β-thalassemia in Palestine and around the world.

摘要

目的

在过去十年中,出现了一些以产前检测和婚前基因筛查为重点的医疗保健举措,旨在降低β地中海贫血的发病率。在巴勒斯坦,已知4%的人口为地中海贫血携带者,尽管有产前检测,但新病例仍不断出现。本研究旨在确定影响巴勒斯坦受β地中海贫血影响胎儿保留或流产决定的因素。

方法

采用便利抽样法选取32名有生育β地中海贫血患儿风险的妇女(72例胎儿)。本横断面研究使用了一份关于产前检测、检测结果、妊娠结局以及影响终止妊娠决定因素的问卷。数据采用SPSS 17版进行分析。

结果

在筛查的胎儿中,36例(50%)为地中海贫血携带者,20例(28%)患有β地中海贫血;17例(85%)受影响胎儿被流产。宗教信仰是反对流产最常被提及的原因,而之前与β地中海贫血患者的接触经历和宣传项目则促使了流产。选择保留受影响胎儿的母亲教育程度一般。较高的教育水平与流产受影响胎儿的决定显著相关(<0.05)。

结论

需要就受β地中海贫血影响胎儿的流产问题达成宗教共识。提高女性教育水平和增加对地中海贫血的认识有助于降低巴勒斯坦乃至全世界β地中海贫血的发病率。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5fcb/5626377/1f6ba8a932c9/ijwh-9-673Fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5fcb/5626377/8075f968ac40/ijwh-9-673Fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5fcb/5626377/30f4a62cf00b/ijwh-9-673Fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5fcb/5626377/1f6ba8a932c9/ijwh-9-673Fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5fcb/5626377/8075f968ac40/ijwh-9-673Fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5fcb/5626377/30f4a62cf00b/ijwh-9-673Fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5fcb/5626377/1f6ba8a932c9/ijwh-9-673Fig3.jpg

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