|本期目录/Table of Contents|

[1]阎妍,刘薇,陈欣.天津市儿童医院2011-2020年罕见病住院病例特征分析[J].天津医科大学学报,2023,29(05):543-546.
 YAN Yan,LIU Wei,CHEN Xin.Analysis on the characteristics of inpatients with rare diseases in Tianjin Children′s Hospital from 2011 to 2020[J].Journal of Tianjin Medical University,2023,29(05):543-546.
点击复制

天津市儿童医院2011-2020年罕见病住院病例特征分析(PDF)
分享到:

《天津医科大学学报》[ISSN:1006-8147/CN:12-1259/R]

卷:
29卷
期数:
2023年05期
页码:
543-546
栏目:
预防医学
出版日期:
2023-09-20

文章信息/Info

Title:
Analysis on the characteristics of inpatients with rare diseases in Tianjin Children′s Hospital from 2011 to 2020
文章编号:
1006-8147(2023)05-0543-04
作者:
阎妍12刘薇2陈欣1
(1.天津医科大学公共卫生学院卫生管理学系,天津300070;2.天津市儿童医院院长办公室,天津300134)
Author(s):
YAN Yan12LIU Wei2CHEN Xin1
(1.Department of Health Management,School of Public Health,Tianjin Medical University,Tianjin 300070,China;2.Hospital Office,Tianjin Children′s Hospital,Tianjin 300134,China)
关键词:
罕见病儿童病例特征
Keywords:
rare diseaseschildrencase characteristics
分类号:
R72;R181.2
DOI:
-
文献标志码:
A
摘要:
目的:分析2011—2020年天津市儿童医院罕见病住院病例特征。方法:根据国家颁布的第一批罕见病目录,以ICD-10编码为基准,选取该院近10年首次收治住院的1 545例罕见病病例为调查对象,分析病例的基本情况、疾病系统分布以及不同性别、年龄间病种类型及顺位变化。结果:共收集罕见病病例1 545例,其中,男性905例,占58.58%,女性640例,占41.42%,按年龄分为婴儿期、幼儿期、学龄前期、学龄期和青少年期5组。涉及21个疾病系统分类中的11个分类,内分泌、营养和代谢疾病为主要罕见病类型,占32.75%,其次为循环系统疾病,第3为神经系统疾病。各系统罕见病存在性别差异(χ2=55.586,P<0.01)。病种构成上共覆盖79种罕见病,病例数居于前十位的占病例总数的59.09%。性别分布上男性病例多于女性病例。男性前5位病种与总体排序一致,女性略有差异。年龄分布上,婴幼儿期是儿童罕见病的主要发生人群,占总数的55.47%。各罕见病在年龄分布上差异有统计学意义(P<0.05)。结论:不同类型罕见病患者男女比例差别较大,不同年龄段儿童罕见病类型存在差异。
Abstract:
Objective: To analyze the characteristics of inpatients with rare diseases in Tianjin Children′s Hospital from 2011 to 2020. Methods:According to the first batch of rare diseases catalogue issued by the state,a total of 1 545 cases of patients with rare diseases admitted to the hospital for the first time in the past 10 years were selected as the study objects as per the International Classification of Diseases(ICD)-10 code. The basic information,disease system distribution,disease types and sequence changes of these cases of patients of different genders and ages were analyzed. Results:A total of 1 545 rare disease cases were collected,of which 905 were male patients,accounting for 58.58%,and 640 were female patients,accounting for 41.42%. They were divided into 5 groups according to age:namely,the infant period,early child period,preschool period,school period and adolescent period groups. In terms of disease types,11 types of the 21 categories of disease systems were involved,of which the endocrine,nutritional and metabolic diseases were the main rare diseases,accounting for 32.75%,followed by the circulatory system diseases and nervous system diseases. There was a gender difference in the rare diseases of these systems (χ2=55.586,P<0.01). In terms of disease composition,a total of 79 types of rare diseases were involved and the top 10 types with the most number of cases accounted for 59.09% of the total number of cases. In terms of gender distribution,the number of male cases involved was greater than that of the female cases. The top five types of diseases in the male cases were consistent with those in the total cases,but there was a slight difference in the case of the female cases. In terms of age distribution,the infantile group involved the most rare diseases of childhood,with the number of cases accounting for 55.47% of the total cases. There were significant differences in the age distribution of all rare diseases(P<0.05). Conclusion:There is a significant difference in the proportions of different types of rare diseases between the male patients and the female patients,and there are differences in the types of rare diseases of childhood in the patients of different ages.

参考文献/References:

[1] 朱以诚,张抒扬. 我国罕见病诊疗和研究平台建立现状和回顾[J].罕见病研究,2022,1(2):93-96.
[2] 人民网. 《中国罕见病定义研究报告2021》发布[EB/OL]. [2021-09-13].http://health.people.com.cn/n1/2021/0913/c14739-32225468.html.
[3] 刘薇,张碧丽,黄金月. 儿童罕见病管理现状、进展与前景[J]. 罕见病研究,2022,1(1):20-27.
[4] 公益时报. 《中国罕见病综合报告(2021)》发布我国注册罕见病患者组织已达52家[EB/OL]. [2021-03- 23].http://www.gongyishibao.com.
[5] SLADE A,ISA F,KYTE D,et al. Patient reported outcome measures in rare diseases:a narrative review[J]. Orphanet J Rare Dis,2018,13(1):61.
[6] 国家卫生健康委官网. 国家卫健委:完成我国首部罕见病诊疗指南发布[J]. 中华医学信息导报,2019,34(5):7.
[7] 郝婵娟,倪鑫. 儿童罕见病诊治现状及展望[J]. 罕见病研究,2022,1(3):229-232.
[8] 刘薇,李定国,张碧丽,等. 儿童罕见病诊疗与管理[M]. 北京:人民卫生出版社,2021:163-169,421-428.
[9] 池欢. 2012-2018年重庆医科大学附属儿童医院1975例儿童罕见病住院患者疾病特征分析[D]. 重庆:重庆医科大学,2019.
[10] 中华人民共和国国家卫生健康委员会.特发性心肌病诊治指南[J].中国实用乡村医生杂志,2019,26(5):13-16.
[11] 李东晓,张尧,张宏武,等. 高同型半胱氨酸血症的诊断、治疗与预防专家共识[J]. 罕少疾病杂志,2022,29(6):1-4.
[12] 张耀东,罗淑颖,陈永兴,等. 2015-2019年河南省儿童医院罕见病的分布特征分析[J].中国中西医结合儿科学,2021,13(2):180-184.

相似文献/References:

[1]刘 艳,张碧丽,王文红,等.儿童肾病综合征合并真菌感染临床分析[J].天津医科大学学报,2013,19(06):496.
[2]宋国超,王雪艳,王 峥,等.天津地区儿童血清特异性IgE过敏原临床分析[J].天津医科大学学报,2014,20(06):477.
[3]卢 洁,薛海玲. 天津市区儿童肺炎支原体肺炎发病情况调查分析[J].天津医科大学学报,2015,21(02):174.
[4]刘 静,孟昭学.北京市通州区3~6岁儿童气质类型分布及气质维度特点分析[J].天津医科大学学报,2015,21(03):261.
[5]耳文元. 幼儿46,X,I(Xq)型Turner 综合征1例报道[J].天津医科大学学报,2015,21(01):58.
[6]王 瑜,郑荣秀.儿童嗜酸性胃肠炎伴血性腹水1例报道[J].天津医科大学学报,2016,22(06):491.
[7]王晓晓,周宇辉,王 倩,等.氨基末端脑钠肽前体水平对丙种球蛋白无反应性川崎病的预测价值[J].天津医科大学学报,2016,22(06):502.
 WANG Xiao-xiao,ZHOU Yu-hui,WANG Qian,et al.Predictive value of plasma brain natriuretic peptide in IVIG-resistant Kawasaki disease[J].Journal of Tianjin Medical University,2016,22(05):502.
[8]郭永盛,邹映雪,翟 嘉,等.73例儿童型塑型性支气管炎临床特征分析[J].天津医科大学学报,2017,23(05):422.
 ?[J].Journal of Tianjin Medical University,2017,23(05):422.
[9]吴 文,崔华雷,王晓晔,等.腹腔镜治疗小儿鞘膜积液疗效观察[J].天津医科大学学报,2017,23(05):462.
[10]李静,刘长山,王雪艳,等.儿童肺炎支原体肺炎肺功能改变及临床意义的探讨[J].天津医科大学学报,2018,24(03):229.

备注/Memo

备注/Memo:
基金项目 天津市卫生健康委员会科技项目(ZC20123)
作者简介 阎妍(1981-),女,硕士在读,研究方向:社会医学与卫生事业管理;通信作者:刘薇,E-mail:lance1971@163.com;陈欣,E-mail:tjmuhr@tmu.edu.cn。
更新日期/Last Update: 2023-09-25