葡糖-6-磷酸脱氢酶缺乏症孕前优生咨询服务状况调查  

Preconception eugenics service of glucose-6-phosphate dehydrogenase deficiency

作　　者：陈少珍 代巧云 赵君 彭左旗 忽新泰 胡序怀[4] 徐丹 汪延希 李晓燕[6] 

机构地区：[1]深圳市坪山新区坪山办事处计划生育服务中心,518118 [2]国家卫生计生委科学技术研究所 [3]深圳市卫生经济学会 [4]深圳市计划生育服务中心 [5]深圳市坪山新区计划生育服务中心 [6]深圳市坪山新区人民医院

出　　处：《中国计划生育学杂志》2015年第4期225-228,共4页Chinese Journal of Family Planning

基　　金：广东省人口和计划生育委员会科研项目(2012208);"十二五"国家科技支撑计划课题(2012BAH07F04)

摘　　要：目的:了解深圳市坪山新区葡糖-6-磷酸脱氢酶(G6PD)缺乏症孕前优生指导情况,对其孕前优生咨询服务提出优化建议。方法:整理孕前优生检查数据,采用电话访谈方式对G6PD活性酶筛查低下者进行相关疾病优生问题调查。结果:在1150例孕前优生检查对象中,共有45例G6PD活性酶筛查低下。电话访谈发现,获取检查结果的占48.89%;从孕前检查医生处获知G6PD缺乏症是遗传病的占22.73%,获得疾病健康教育资料的占2.22%;了解疾病具有遗传性的占2.22%,想了解病因的占6.67%。22.73%的获取检查结果者在得知结果后心情恐慌、主动联系家人询问家族史。结论:G6PD缺乏症孕前优生指导服务不足,服务对象疾病知识匮乏,应细化服务指南和流程,深入开展针对该病的孕前优生咨询指导服务。Objective：To explore the status of preconception eugenics service in Pingshan District in order to provide suggestions to improve the service.Methods：Sorting preconception eugenics data and phone-interviewing people suffered glucose-6-phosphate dehydrogenase（G6PD）deficiency were conducted.Results：Forty-five people suffered low enzyme activities of G6 PD out of 1150 respondents.By phone-interviewing,48.89% of the interviewees received the test results,22.73% get to know＇G6PD deficiency is an inherited disease＇from doctors in charge of preconception care,2.22% acquired the material of health education on the disease,2.22% understood the disease could be inherited,6.67% were seeking for the origin of the disease.After knowing the positive test results,22.73% went panic and contacted family to inquire about the family medical history.Conclusion：The informing service of G6 PD deficiency is gravely insufficient.The population lacks of the related knowledge.It should be emphasized to refine the service procedure and strengthen the consulting service of preconception care.

关 键 词：葡糖-6-磷酸脱氢酶缺乏症 孕前优生 咨询指导 出生缺陷干预 

分 类 号：R169.1[医药卫生—公共卫生与预防医学]