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β地中海贫血产前诊断的障碍:来自巴基斯坦的经验

Impediments to prenatal diagnosis for beta thalassaemia: experiences from Pakistan.

作者信息

Naseem Sajida, Ahmed Suhaib, Vahidy Farhaan

机构信息

Armed Forces Post Graduate Medical Institute, Department of Community Health Sciences, Rawalpindi, Pakistan.

出版信息

Prenat Diagn. 2008 Dec;28(12):1116-8. doi: 10.1002/pd.2133.

DOI:10.1002/pd.2133
PMID:19003799
Abstract

OBJECTIVE

To investigate the practices of parents of beta thalassaemia children towards utilization of prenatal diagnosis (PND) in Pakistan.

METHODS

A cross-sectional study was done between April and September 2007 at two thalassaemia treatment centers in Rawalpindi and Islamabad. Simple random sampling was employed to interview 215 parents of thalassaemic children. Parents of thalassaemic children who were not planning to have any more children were excluded from the study. A structured questionnaire with preassigned values was developed for collection of data.

RESULTS

Out of the 215 respondents, 149 (69%) families had a pregnancy following the birth of the registered thalassaemic child. Among 149 couples, 90 (60%) did not request PND. The main reasons for underutilization of PND included lack of awareness (23%), high cost (23%), poor access (17%), delay in seeking (16%) and advice against the test (12%). A significant improvement in the use of PND was observed with increasing mother's education (p < 0.016).

CONCLUSION

PND for thalassaemia is available in Pakistan for over a decade but its use remains limited. There is a need to increase its utilization by addressing various impediments noted in this study.

摘要

目的

调查巴基斯坦β地中海贫血患儿父母利用产前诊断(PND)的情况。

方法

2007年4月至9月在拉瓦尔品第和伊斯兰堡的两个地中海贫血治疗中心进行了一项横断面研究。采用简单随机抽样法对215名地中海贫血患儿的父母进行访谈。不打算再生育的地中海贫血患儿父母被排除在研究之外。设计了一份带有预先设定值的结构化问卷用于收集数据。

结果

在215名受访者中,149个(69%)家庭在已登记的地中海贫血患儿出生后又怀孕了。在这149对夫妇中,90个(60%)没有要求进行产前诊断。产前诊断利用不足的主要原因包括缺乏认识(23%)、费用高(23%)、难以获得服务(17%)、寻求诊断延迟(16%)以及有人建议不要进行该检查(12%)。随着母亲受教育程度的提高,产前诊断的使用率有显著提高(p < 0.016)。

结论

在巴基斯坦,地中海贫血的产前诊断已有十多年,但使用仍然有限。有必要通过解决本研究中指出的各种障碍来提高其利用率。

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