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| National multi-center study on family disease burden of preschoolers with autism spectrum disorder |
| CHENG Jingyi1, WANG Ke1, YANG Ting1, CHEN Jie1, CHEN Li1, DAI Ying1, JIA Feiyong2, WU Lijie3, HAO Yan4, LI Ling5, ZHANG Jie6, KE Xiaoyan7, YI Mingji8, HONG Qi9, CHEN Jinjin10, FANG Shuanfeng11, WANG Yichao12, WANG Qi13, JIN Chunhua14, LI Tingyu1 |
| 1．Department of Child Health, Children's Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Nutrition and Health, Ministry of Education Key Laboratory of Child Development and Disorders, National Clinical Research Center of Child Health and Disorders, Chongqing 400014, China; 2．Department of Developmental and Behavioral Pediatrics, the First Hospital of Jilin University, Changchun 130021, Jilin Province, China; 3．Research Center for Child Development and Behavior, Harbin Medical University, Harbin 150081, Heilongjiang Province, China; 4．Tongji Hospital of Tongji Medical College, Huazhong University of Science and Technology, Wuhan 430030, Hubei Province, China; 5．Hainan Women and Children's Medical Center, Haikou 570100, Hainan Province, China; 6．Xi'an Children's Hospital, Xi'an 710043, Shaanxi Province, China; 7．The Affiliated Brain Hospital of Nanjing Medical University, Nanjing 210005, Jiangsu Province, China; 8．The Affiliated Hospital of Qingdao University, Qingdao 266555, Shandong Province, China; 9．Bao'an District Maternal and Child Health Hospital, Shenzhen 518101, Guangdong Province, China; 10．Shanghai Children's Hospital, Shanghai 200062, China; 11．Henan Provincial Children's Hospital, Zhengzhou 450018, Henan Province, China; 12．HunanProvincial Maternal and Child Health Hospital, Changsha 410008, Hunan Province, China; 13．DeyangMunicipal Maternal and Child Health Hospital, Deyang 618000, Sichuan Province, China; 14．Children's Hospital Affiliated to Capital Institute of Pediatrics, Beijing 100020, China |
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Abstract Objective To investigate the family disease burden of children with autism spectrum disorder (ASD) in China, and provide a scientific reference for decision makers to allocate public resources and organize public services for people with ASD. Methods A selfdeveloped questionnaire was used to investigate 1 538 families of children with ASD in 13 cities in northern, eastern, western, southern, and central China. The main content of the investigation was the economic and psychological burden of the family. Results The median cost of medical treatment and rehabilitation for children with ASD in China was 60 000 yuan/year, of which 60 000 yuan/year in the north, 80 000 yuan/year in the east, 60 000 yuan/year in the west, 50 000 yuan/year in the south, and 60 000 yuan/year in the central area. There were significant differences among different regions (P<0.05). Among the families, 61.15% resigned because of ASD childcare issues, 43.90% moved to another place for rehabilitation, and 67.04% had family conflicts due to children's illness. Conclusion ASD has caused serious economic and psychological burdens to the family. To create a better social and family environment for the rehabilitation of ASD children, the assistance and medical insurance coverage should be further increased, and more professional rehabilitation training institutions should be constructed. At the same time, attention should be paid to the psychological burden of family members of children with ASD and reasonable interventions should be implemented for related risk factors.
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