The intervention dilemma and high burden of children with autism in Guizhou province, Southwest China

Abstract

BackgroundAutism spectrum disorder (ASD) is a highly disabling neurodevelopmental disorder, and the burden is high. Data on the burden of ASD are limited in China, especially in the southwest. Therefore, the aims of this study were to investigate the intervention status and burden of children with ASD in Southwest China.Materials and methodsFamilies of children with ASD were recruited from hospitals, special education schools, and private rehabilitation centers; they participated in the survey and completed the questionnaire. Descriptive analysis was conducted on the questionnaire results, which included basic demographic characteristics, rehabilitation status, and burden. Multivariate analysis was used to analyze the association of basic family demographic characteristics, rehabilitation status, and costs of ASD.ResultsA total of 231 families of children with ASD participated in this survey, and 78.35% (181/231) of the children with ASD were male. The mean age was 4.34 ± 2.09 years. A total of 55.84% (129/231) of the children with ASD had an intellectual disability. Only 46.32% (107/231) started receiving intervention within 1 month after diagnosis. The institutions for rehabilitation interventions for children with ASD were mainly tertiary hospitals (39.39%), special education schools (29.87%) and private rehabilitation institutions (21.64%). For a total of 42.86% (99/231) of the children with ASD, the duration of the intervention was less than 10 h per week. A total of 74.89% (173/231) of the children with ASD received a rehabilitation intervention at home. A total of 66.67% of the parents were satisfied with the treatment. The monthly cost of medical intervention for the patients of children with autism was 7,225 ± 474 RMB ($1,134 ± 74), and the non-medical intervention cost was 2,133 ± 107 RMB ($334 ± 17). The annual burden of patients with autism was 86,700 ± 5,688 RMB ($13,596 ± 892). The estimated total annual burden of ASD was 5.548 billion RMB ($870 million) in Guizhou province.ConclusionThe results revealed that rehabilitation resources are limited and that the burden of ASD is high in Guizhou province; therefore, improving the rehabilitation status and easing the burden of children with ASD is urgent in these regions.

Inequality and Heterogeneity in Medical Resources for Children with Autism Spectrum Disorders: A Study in the Ethnic Minority Region of Southern China

“…Both the total retail sales of consumer goods and GDPpc showed signi cant associations with the dependent variable, with approximate positive effects on CTPP and CMI, suggesting a possible general correlations between economic conditions and ASD healthcare resources. The total retail sales of consumer goods showed positive statistically signi cant correlations in all three MGWR models, and we suggest that it played a large role in the allocation of resources and coverage effects of medical interventions for ASD and, in some way, re ected the regional population's capacity to cope with the heavy burden of ASD [7,57].…”

“…Currently, approximately 75% of ASD medical institutions in Guangxi are government-sponsored, nonpro t public institutions, and most of these institutions rely on women's and children's hospitals and rehabilitation centres for disabled people. The operation of ASD institutions and the salaries and subsidies of professional and technical staff come from nancial allocations and require signi cant nancial support [7,51]. GDPpc and total retail sales of consumer goods directly re ect the regional economic status, and show a global positive correlation with CTPP.…”

“…The demographic and socioeconomic indicators considered in this study include (1) population density, (2) proportion of the population under 14 years old, (3) proportion of town residents, (4) years of schooling per capita, (5) gross domestic product per capita, (6) disposable income per capita, (7) total retail sales of consumer goods, (8) general public budget revenue, and (9) number of enterprises above designated size. These data were collected from the Guangxi Bureau of Statistics as of December 31, 2021[18].…”

“…According to a recent national study, the prevalence of ASD in children in China ranges from 0.64-0.74% [4], with the prevalence in the coastal provinces of southern China at around 0.62%, slightly lower than the national level [5]. Due to the severe consequences and heavy social and economic burden of the disease [6,7], Chinese health authorities have gradually expanded the screening scope in recent years. Each year, hundreds of thousands of children with ASD cases are identi ed and diagnosed because of the large population base.…”