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. 2022 Nov 2:13:929833.
doi: 10.3389/fpsyt.2022.929833. eCollection 2022.

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

Ye Liu  1 , Fang Zhou  2 , Jixuan Qin  3 , Yong Lin  4 , Tonghuan Li  5 , Chengyong Zhu  6 , Fang Long  7 , Xike Wang  2 , Xiao Hu  8 , Hao Zhou  2
Affiliations

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

Ye Liu et al. Front Psychiatry. .

Abstract

Background: Autism 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 methods: Families 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.

Results: A 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.

Conclusion: The 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.

Keywords: China; autism; disease burden; questionnaire; rehabilitation status.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

FIGURE 1
FIGURE 1
Influence of parental occupation on the intervention status of children with autism spectrum disorder (ASD), (A,B) for the choice of rehabilitation institutions, (C,D) for the interval from diagnosis to receiving intervention, (E,F) for the total duration of the intervention per week, (G,H) for satisfaction with the intervention effect. *p < 0.05; ns, p > 0.05.
FIGURE 2
FIGURE 2
Analysis of influencing factors of satisfaction with intervention treatment for children with Autism spectrum disorder (ASD). (A) For total intervention duration per week and interval from diagnosis to receiving intervention, (B) for parents’ degree and monthly income, and (C) for developmental delays, family intervention program, and treatment beyond intervention. *p < 0.05; ns, p > 0.05.
FIGURE 3
FIGURE 3
Influence of rehabilitation location on the total weekly intervention duration for children with Autism spectrum disorder (ASD). *p < 0.05; ns, p > 0.05.
FIGURE 4
FIGURE 4
Impacts of different factors on rehabilitation costs. *p < 0.05; ns, p > 0.05.
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