摘要
目的探究河南省妇幼保健院儿童罕见病的构成情况与地域分布特点,为医院在罕见病的诊断与治疗工作,以及针对本地区儿童罕见病的流行病学研究提供具有参考意义的资料。方法结合相关病种目录清单,收集2019—2023年共4096名罕见病儿童信息,深入探究不同年龄段罕见病的分布情况及经济负担情况。结果罕见病住院患儿中,男性患儿占59.5%,高于女性患儿的40.5%。年龄分布中,婴儿期的患儿数量最为突出,占比达61.2%。胆道闭锁与先天性脊柱侧弯半椎体畸形男女比例分别为0.69∶1、0.94∶1,其他病种女性占比均低于男性。婴儿痉挛症男性与女性占比相差最大,男性占比高于女性。前10位病种中婴儿期患儿的平均住院费用(62958.96元)高于其他年龄期。结论罕见病不同年龄段病种、性别存在差异且发病较早,疾病经济负担较大,应加强罕见病早期诊断和早期诊治。
Objective To explore the composition and geographical distribution characteristics of rare diseases in children in Henan Provincial Maternal and Child Health Hospital,in order to provide valuable data for the hospital’s diagnosis and treatment of rare diseases,as well as for the epidemiological study of rare diseases in children in this area.Methods Combined with the list of related diseases,the information of 4096 children with rare diseases from 2019 to 2023 was collected,and the distribution and economic burden of rare diseases in different age groups were deeply investigated.Results Among hospitalized children with rare diseases,male children accounted for 59.5%,which was higher than 40.5%of female children.The distribution characteristics at the age level showed that the number of infants was the most prominent,accounting for 61.2%.The male and female ratios of biliary atresia and congenital scoliosis hemivertebral deformity were 0.69∶1 and 0.94∶1,respectively.The proportion of other diseases in females was lower than that in males.The proportion of infantile spasm was the largest difference between males and females,and the proportion of males was higher than that of females.Among the top ten diseases,the average hospitalization cost of infants(62958.96 yuan)was higher than that of other age groups.Conclusion There are differences in rare diseases in different age groups and gender,and the disease age is early,and the disease economic burden is heavier.Early diagnosis and treatment of rare diseases should be strengthened.
作者
徐云飞
路晨琳
李晓乐
蒋重阳
徐一卓
张俊清
XU Yunfei;LU Chenlin;LI Xiaole;JIANG Chongyang;XU Yizhuo;ZHANG Junqing(The Third Affiliated Hospital of Zhengzhou University,Zhengzhou 450052,China)
出处
《河南医学研究》
2025年第16期2881-2884,共4页
Henan Medical Research
基金
河南省医学科技攻关计划软科学项目(RKX202302019)
河南省医学科技攻关计划联合共建项目(LHGJ20220552)。
关键词
罕见病
儿童
疾病经济负担
性别差异
年龄分布特征
rare disease
children
economic burden of disease
gender difference
age distribution characteristics
