Characteristics Analysis of 4 096 Inpatients with Rare Diseases in Children in Henan Maternal and Child Health Hospital from 2019 to 2023
XU Yunfei
LU Chenlin
LI Xiaole
JIANG Chongyang
XU Yizhuo
ZHANG Junqing
Abstract：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 4 096 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(62 958.96 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.
Keywords：rare diseasechildreneconomic burden of diseasegender differenceage distribution characteristics
Publication Date：2025-08-28
Online Publishing Date：2026-09-12(First online date of this platform, not the publication date of the document)
Pages：4( 2881-2884 )