河南省脑性瘫痪儿童登记管理及监测网络建设与数据分析

doi:10.3969/j.issn.1006-9771.2020.08.003

《中国康复理论与实践》 ›› 2020, Vol. 26 ›› Issue (8): 885-891.doi: 10.3969/j.issn.1006-9771.2020.08.003

河南省脑性瘫痪儿童登记管理及监测网络建设与数据分析

袁俊英^1,^2,³,王以文^1,³,王军^1,^2,³,刘杰^1,³,崔博^1,³,蔡志军^1,³,陈海^1,³,高永强^1,³,刘峰伟^1,³,牛国辉^1,³,苏春娅^1,³,王俊辉^1,³,王亮^1,³,熊华春^1,³,翟红印^1,³,朱登纳^1,^2,³()

1.郑州大学第三附属医院儿童康复科,河南郑州市 450052
2.河南省小儿脑损伤重点实验室,河南郑州市 450052
3.郑州市儿童脑瘫防治重点实验室,河南郑州市 450052

收稿日期:2020-06-10 修回日期:2020-06-19 出版日期:2020-08-25 发布日期:2020-08-31
通讯作者: 朱登纳 E-mail:zhudengna@126.com
作者简介:袁俊英(1978-),女,汉族,河南驻马店市人,博士,副主任医师,主要研究方向：儿童康复。
基金资助:
河南省医学科技攻关省部共建项目(SBGJ2018047)

Primary Study of Henan Cerebral Palsy Register and Rehabilitation Management System

YUAN Jun-ying^1,^2,³,WANG Yi-wen^1,³,WANG Jun^1,^2,³,LIU Jie^1,³,CUI Bo^1,³,CAI Zhi-jun^1,³,CHEN Hai^1,³,GAO Yong-qiang^1,³,LIU Feng-wei^1,³,NIU Guo-hui^1,³,SU Chun-ya^1,³,WANG Jun-hui^1,³,WANG Liang^1,³,XIONG Hua-chun^1,³,ZHAI Hong-yin^1,³,ZHU Deng-na^1,^2,³()

1. Children Rehabilitation Department, the Third Affiliated Hospital, Zhengzhou University, Zhengzhou, Henan 450052, China
2. Key Laboratory of Brain Injury in Henan Province, Zhengzhou, Henan 450052, China
3. Key Laboratory of Prevention and Treatment of Cerebral Palsy in Zhengzhou, Zhengzhou, Henan 450052, China

Received:2020-06-10 Revised:2020-06-19 Published:2020-08-25 Online:2020-08-31
Contact: ZHU Deng-na E-mail:zhudengna@126.com
Supported by:
Henan Province Medical Science and Technology Project(SBGJ2018047)

摘要/Abstract

摘要：

目的介绍河南省脑瘫儿童登记及康复管理平台(HCPRRMS)建设过程,探讨区域性脑瘫登记管理及监测网络建设思路。方法系统性地介绍HCPRRMS建设过程、登记内容及初步结果。结果 2014年开始自主开发HCPRRMS,2015年3月开始登记单中心住院脑瘫儿童相关信息,2018年底开始在河南省多家县市级医疗及康复机构推广应用,截止到2019年9月共23家儿童康复机构使用。共纳入1357例脑瘫儿童,登记内容包括性别、出生体质量、孕周、高危因素、脑瘫分型、粗大运动功能分级(GMFCS)以及并发症情况。其中,男性936例(68.98%);孕周小于37周501例(36.92%);出生体质量小于2500 g 443例(32.65%);出生时并发缺氧缺血性脑病者430例(31.69%);脑瘫类型中痉挛型最多,为1117例(86.74%);不同型别脑瘫儿童GMFCS分级有显著性差异(P < 0.05);有头部MRI检查记录者1117例,其中侧脑室周围白质软化为主的白质损伤最多,为480例(42.97%);并发症方面,并发癫痫196例(14.44%),并发视觉障碍109例(8.03%),并发听觉障碍158例(11.64%),≥ 2岁769例中,并发语言-言语障碍424例(52.66%),≥ 4岁216例中,并发智力障碍82例(37.96%)。结论 HCPRRMS有助于了解脑瘫儿童高危因素、临床和影像学特点及并发症情况。

关键词: 脑性瘫痪, 登记管理, 网络建设

Abstract:

Objective To introduce the construction of Henan Cerebral Palsy Register and Rehabilitation Management System (HCPRRMS) and to explore the construction project of regional register and surveillance of cerebral palsy.Methods The construction process, registration content and preliminary results of HCPRRMS were systematically introduced.Results HCPRRMS was independent developed in 2014. Since March, 2015, the system has been used to register information of patients with cerebral palsy in the Third Affiliated Hospital of Zhengzhou University. Until September, 2019, a total of 23 child rehabilitation institutions had used the registration management system. There were 1357 patients with cerebral palsy registered in this system, in which 936 cases (68.98%) were male, 501 cases (36.92%) were with gestational weeks < 37, 443 cases (32.65%) were with birth weight < 2500 g, and 430 cases (31.69%) were born with hypoxic-ischemic encephalopathy. Among them, the spastic cerebral palsy patients (1117 cases, 86.74%) accounted for the highest proportion. There was significant difference among types of cerebral palsy and the classification of GMFCS. A total of 1117 patients with cerebral palsy showed MRI-identified brain abnormalities, in which, periventricular leukomalacia accounted for the most (480 cases). For the complications, epilepsy accounted for 14.44% (196 cases), vision impairment accounted for 8.03% (109 cases), hearing impairment accounted for 11.64% (158 cases). Among 769 cases aged more than two years, language-speech dysfunction accounted for 52.66% (424 cases); and among 216 cases aged more than four years, mental retardation accounted for 37.96% (82 cases). Conclusion HCPRRMS could help to understand the risk factors, clinical characteristics, and complications of cerebral palsy.

Key words: cerebral palsy, registration management, network construction

中图分类号:

R742.3

袁俊英,王以文,王军,刘杰,崔博,蔡志军,陈海,高永强,刘峰伟,牛国辉,苏春娅,王俊辉,王亮,熊华春,翟红印,朱登纳. 河南省脑性瘫痪儿童登记管理及监测网络建设与数据分析[J]. 《中国康复理论与实践》, 2020, 26(8): 885-891.

YUAN Jun-ying,WANG Yi-wen,WANG Jun,LIU Jie,CUI Bo,CAI Zhi-jun,CHEN Hai,GAO Yong-qiang,LIU Feng-wei,NIU Guo-hui,SU Chun-ya,WANG Jun-hui,WANG Liang,XIONG Hua-chun,ZHAI Hong-yin,ZHU Deng-na. Primary Study of Henan Cerebral Palsy Register and Rehabilitation Management System[J]. 《Chinese Journal of Rehabilitation Theory and Practice》, 2020, 26(8): 885-891.

图/表 1

参考文献 27

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型别	GMFCS分级[n(%]					总计
型别	I级	II级	III级	IV级	V级	总计
痉挛型偏瘫	140(84.85%)	20(12.12%)	5(3.03%)	0	0	165
痉挛型双瘫	162(37.76%)	148(34.5%)	107(24.94%)	12(2.8%)	0	429
痉挛型四肢瘫	0	0	15(14.85%)	61(60.4%)	25(24.75%)	101
不随意运动型	0	5(27.78%)	3(16.67%)	3(16.67%)	7(38.89%)	18
共济失调型	3(30%)	3(30%)	2(20%)	2(20%)	0	10
混合型	1(2.27%)	2(4.55%)	8(18.18%)	14(31.82%)	19(43.18%)	44
总计	306(39.9%)	178(23.21%)	140(18.25%)	92(11.99%)	51(6.65%)	767

河南省脑性瘫痪儿童登记管理及监测网络建设与数据分析

Primary Study of Henan Cerebral Palsy Register and Rehabilitation Management System

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