Analysis Of 1975 Inpatients With Rare Diseases In Children’s Hospital Of Chongqing Medical University From 2012 To 2018

Objective: To analyze the hospitalization data of inpatients with rare diseases in Children’s Hospital of Chongqing Medical University from2012 to 2018,and to provide a scientific basis for further study on the epidemiology and disease characteristics of rare diseases in children of China.Methods: A retrospective analysis of 1975 inpatients with rare diseases from 2012 to 2018 was conducted according to the first list of rare diseases in 2018.Results: The number of inpatients with rare diseases in each year accounted for 0.28%-0.69% of hospitalized patients.The first type of rare diseases were blood and hematopoietic diseases and certain diseases involving immune mechanisms(31.04%).Among the different age groups,infants(0-3 years old)had the largest number(864 people,43.75%).The inpatients with rare diseases mainly came from Sichuan and Chongqing(1484,75.14%),including 1462 urban residents(74.03%)and 513 ruralpatients(25.97%),and the average hospital stay was 8.00(4.00-12.00)days.The average expense is 9685.54(4283.86-20917.38)yuan,and the proportion of examination fees fluctuated between 24.39% and 33.26%.There was a significant difference in hospitalization expenses and hospitalization days between different types of rare diseases(P=0.00),among which whether discharged under medical advice,hospitalization days and age groups were correlated with hospitalization expenses(P<0.01).Conclusion: Children with rare diseases have large differences and complex disease characteristics.Individualized medical treatment is of great significance for their diagnosis and treatment.