Abstract
Based on the data of children with cerebral palsy (CP) in Changzhou obtained by the Disabled Persons' Federation, this study sampled some children with CP and investigated their survival status, treatment cost, and family burden so as to provide scientific decision-making basis and policy suggestions for coping with disease hazards and improving children's quality of life. In this study, a simple random sampling method was used to conduct household surveys of the selected children with CP. The economic burden of CP is measured by direct and indirect methods, and the quality of life of patients of children with CP and their families is analyzed qualitatively and quantitatively by the EuroQol Five Dimensions (EQ-5D) Questionnaire. The average family economic burden of each case of CP in Changzhou was about 4,188,500 yuan, of which the direct medical burden was 205,800 yuan and the indirect economic burden was 3,982,700 yuan. The socioeconomic burden of CP in Changzhou is as high as about 2.244 billion yuan. From the EQ-5D measurement results of 55 children with CP, the average index score was 0.423, which was lower than the national general population level. The proportions of patients with CP who have problems in the five aspects of action, self-care, daily activities, pain/discomfort, and anxiety/depression are 72.73%, 81.82%, 81.82%, 83.64%, and 92.73%, respectively, which are significantly higher than those of the national general population. The average score of the Visual Analogue Scale (VAS) is 58.09, which is significantly lower than the national general population level. The only major factor affecting the quality of life of patients with CP and their families is the health status represented by the EQ-5D score. To liberate and develop the labor ability of patients and their direct caregivers through clinical treatment, rehabilitation, and special education is the most effective way to reduce the socioeconomic burden of CP. Relevant government departments should perform their duties, integrate social assistance resources, implement early intervention, and launch targeted support and assistance policy.
Highlights
Cerebral palsy (CP) in children has become the most serious disease problem affecting children’s health worldwide. e incidence of CP in China is about 2.48% [1]
The average family economic burden of each patient with cerebral palsy in Changzhou is about 4,188,500 yuan, of which the indirect economic burden accounts for the vast majority, and the direct medical burden accounts for only 4.91%
Owing to the fact that patients with CP and their caregivers are unable to engage in normal production all year round, their family income is low, which is generally lower than the average family income
Summary
Cerebral palsy (CP) in children has become the most serious disease problem affecting children’s health worldwide. e incidence of CP in China is about 2.48% [1]. Cerebral palsy (CP) in children has become the most serious disease problem affecting children’s health worldwide. Based on a population of 12 million born in 2020 [2], there were approximately 29,760 children with CP born in China. CP has an irreversible impact on the health of patients and seriously affects their quality of life. In the meantime, it brings a heavy economic burden to society and families, causing a series of social problems. In terms of physical function, patients with CP have poor normal mobility and self-care ability, and most of them cannot take care of themselves. As far as social interaction, they rarely communicate with other children normally and lack corresponding entertainment activities. e total scores of children with CP in the Pediatric Quality of Life Inventory
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