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

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          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.

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          Most cited references24

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          Global, regional, and national burden of 12 mental disorders in 204 countries and territories, 1990–2019: a systematic analysis for the Global Burden of Disease Study 2019

          (2022)
          Summary Background The mental disorders included in the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2019 were depressive disorders, anxiety disorders, bipolar disorder, schizophrenia, autism spectrum disorders, conduct disorder, attention-deficit hyperactivity disorder, eating disorders, idiopathic developmental intellectual disability, and a residual category of other mental disorders. We aimed to measure the global, regional, and national prevalence, disability-adjusted life-years (DALYS), years lived with disability (YLDs), and years of life lost (YLLs) for mental disorders from 1990 to 2019. Methods In this study, we assessed prevalence and burden estimates from GBD 2019 for 12 mental disorders, males and females, 23 age groups, 204 countries and territories, between 1990 and 2019. DALYs were estimated as the sum of YLDs and YLLs to premature mortality. We systematically reviewed PsycINFO, Embase, PubMed, and the Global Health Data Exchange to obtain data on prevalence, incidence, remission, duration, severity, and excess mortality for each mental disorder. These data informed a Bayesian meta-regression analysis to estimate prevalence by disorder, age, sex, year, and location. Prevalence was multiplied by corresponding disability weights to estimate YLDs. Cause-specific deaths were compiled from mortality surveillance databases. The Cause of Death Ensemble modelling strategy was used to estimate death rate by age, sex, year, and location. The death rates were multiplied by the years of life expected to be remaining at death based on a normative life expectancy to estimate YLLs. Deaths and YLLs could be calculated only for anorexia nervosa and bulimia nervosa, since these were the only mental disorders identified as underlying causes of death in GBD 2019. Findings Between 1990 and 2019, the global number of DALYs due to mental disorders increased from 80·8 million (95% uncertainty interval [UI] 59·5–105·9) to 125·3 million (93·0–163·2), and the proportion of global DALYs attributed to mental disorders increased from 3·1% (95% UI 2·4–3·9) to 4·9% (3·9–6·1). Age-standardised DALY rates remained largely consistent between 1990 (1581·2 DALYs [1170·9–2061·4] per 100 000 people) and 2019 (1566·2 DALYs [1160·1–2042·8] per 100 000 people). YLDs contributed to most of the mental disorder burden, with 125·3 million YLDs (95% UI 93·0–163·2; 14·6% [12·2–16·8] of global YLDs) in 2019 attributable to mental disorders. Eating disorders accounted for 17 361·5 YLLs (95% UI 15 518·5–21 459·8). Globally, the age-standardised DALY rate for mental disorders was 1426·5 (95% UI 1056·4–1869·5) per 100 000 population among males and 1703·3 (1261·5–2237·8) per 100 000 population among females. Age-standardised DALY rates were highest in Australasia, Tropical Latin America, and high-income North America. Interpretation GBD 2019 showed that mental disorders remained among the top ten leading causes of burden worldwide, with no evidence of global reduction in the burden since 1990. The estimated YLLs for mental disorders were extremely low and do not reflect premature mortality in individuals with mental disorders. Research to establish causal pathways between mental disorders and other fatal health outcomes is recommended so that this may be addressed within the GBD study. To reduce the burden of mental disorders, coordinated delivery of effective prevention and treatment programmes by governments and the global health community is imperative. Funding Bill & Melinda Gates Foundation, Australian National Health and Medical Research Council, Queensland Department of Health, Australia.
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            Autism spectrum disorder

            Autism spectrum disorder is a term used to describe a constellation of early-appearing social communication deficits and repetitive sensory–motor behaviours associated with a strong genetic component as well as other causes. The outlook for many individuals with autism spectrum disorder today is brighter than it was 50 years ago; more people with the condition are able to speak, read, and live in the community rather than in institutions, and some will be largely free from symptoms of the disorder by adulthood. Nevertheless, most individuals will not work full-time or live independently. Genetics and neuroscience have identified intriguing patterns of risk, but without much practical benefit yet. Considerable work is still needed to understand how and when behavioural and medical treatments can be effective, and for which children, including those with substantial comorbidities. It is also important to implement what we already know and develop services for adults with autism spectrum disorder. Clinicians can make a difference by providing timely and individualised help to families navigating referrals and access to community support systems, by providing accurate information despite often unfiltered media input, and by anticipating transitions such as family changes and school entry and leaving.
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              Costs of autism spectrum disorders in the United Kingdom and the United States.

              The economic effect of autism spectrum disorders (ASDs) on individuals with the disorder, their families, and society as a whole is poorly understood and has not been updated in light of recent findings.
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                Author and article information

                Contributors
                Journal
                Front Psychiatry
                Front Psychiatry
                Front. Psychiatry
                Frontiers in Psychiatry
                Frontiers Media S.A.
                1664-0640
                02 November 2022
                2022
                : 13
                : 929833
                Affiliations
                [1] 1Department of Otolaryngology, Guizhou Provincial People’s Hospital, Medical College of Guizhou University , Guiyang, China
                [2] 2Department of Developmental Behavioral Pediatrics, Guizhou Provincial People’s Hospital, Medical College of Guizhou University , Guiyang, China
                [3] 3Department of Pediatric Rehabilitation, Anshun Women’s & Children’s Hospital , Anshun, China
                [4] 4Department of Pediatric Rehabilitation, The First People’s Hospital of Zunyi , Zunyi, China
                [5] 5Department of Pediatric Rehabilitation, Affiliated Hospital of Zunyi Medical University , Zunyi, China
                [6] 6Department of Pediatric Rehabilitation, The Third Affiliated Hospital of Guizhou Medical University , Duyun, China
                [7] 7Department of Healthcare, Liupanshui Women & Children Hospital , Liupanshui, China
                [8] 8Department of Neurology, Guizhou Provincial People’s Hospital , Guiyang, China
                Author notes

                Edited by: Diana Schendel, Drexel University, United States

                Reviewed by: Caihong Sun, Harbin Medical University, China; Xiaohua Liang, Children’s Hospital of Chongqing Medical University, China; Michele Roccella, University of Palermo, Italy

                *Correspondence: Hao Zhou, haoye320@ 123456163.com

                These authors have contributed equally to this work

                This article was submitted to Autism, a section of the journal Frontiers in Psychiatry

                Article
                10.3389/fpsyt.2022.929833
                9666780
                e6ab7c99-7ffc-4fd6-a599-df47c00d3ad6
                Copyright © 2022 Liu, Zhou, Qin, Lin, Li, Zhu, Long, Wang, Hu and Zhou.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 27 April 2022
                : 10 October 2022
                Page count
                Figures: 4, Tables: 2, Equations: 0, References: 24, Pages: 9, Words: 5188
                Categories
                Psychiatry
                Original Research

                Clinical Psychology & Psychiatry
                autism,rehabilitation status,disease burden,questionnaire,china
                Clinical Psychology & Psychiatry
                autism, rehabilitation status, disease burden, questionnaire, china

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