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解决自闭症患者从诊断到成年的医疗保健获取障碍。

Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood.

机构信息

Shift Health, Toronto, ON, Canada.

Department of Pathology and Molecular Medicine, McMaster University, Hamilton, ON, Canada.

出版信息

Pediatr Res. 2022 Apr;91(5):1028-1035. doi: 10.1038/s41390-021-01465-y. Epub 2021 Mar 25.

Abstract

Most individuals with autism spectrum disorder (ASD)-a complex, life-long developmental disorder-do not have access to the care required to address their diverse health needs. Here, we review: (1) common barriers to healthcare access (shortage/cost of services; physician awareness; stigma); (2) barriers encountered primarily during childhood (limited screening/diagnosis; unclear referral pathways), transition to adulthood (insufficient healthcare transition services; suboptimal physician awareness of healthcare needs) and adulthood (shortage of services/limited insurance; communication difficulties with physicians; limited awareness of healthcare needs of aging adults); and (3) advances in research/program development for better healthcare access. A robust understanding of barriers to accessing healthcare across the lifespan of autistic individuals is critical to ensuring the best use of healthcare resources to improve social, physical, and mental health outcomes. Stakeholders must strengthen healthcare service provision by coming together to: better understand healthcare needs of underserved populations; strengthen medical training on care of autistic individuals; increase public awareness of ASD; promote research into/uptake of tools for ASD screening, diagnosis, and treatment; understand specific healthcare needs of autistic individuals in lower resource countries; and conduct longitudinal studies to understand the lifetime health, social, and economic impacts of ASD and enable the evaluation of novel approaches to increasing healthcare access. IMPACT: Despite the growing body of evidence, our understanding of barriers to healthcare encountered by individuals with ASD remains limited, particularly beyond childhood and in lower resource countries. We describe current and emerging barriers to healthcare access encountered by individuals with ASD across the lifespan. We recommend that stakeholders develop evidence-informed policies, programs, and technologies that address barriers to healthcare access for individuals with ASD and consider broad, equitable implementation to maximize impact.

摘要

大多数自闭症谱系障碍(ASD)患者——一种复杂的、终身的发育障碍——无法获得满足其多样化健康需求所需的护理。在这里,我们回顾了:(1)获得医疗保健的常见障碍(服务短缺/成本;医生意识;污名化);(2)在儿童期(有限的筛查/诊断;不明确的转诊途径)、向成年期过渡期间(过渡医疗服务不足;医生对医疗需求的认识不足)和成年期(服务短缺/保险有限;与医生沟通困难;对老年患者医疗需求的认识有限)遇到的障碍;以及(3)为改善医疗保健获取而进行的研究/计划开发方面的进展。全面了解自闭症患者一生中获得医疗保健的障碍对于确保最佳利用医疗保健资源以改善社交、身体和心理健康结果至关重要。利益相关者必须通过团结协作来加强医疗保健服务的提供:更好地了解服务不足人群的医疗保健需求;加强对自闭症患者护理的医学培训;提高公众对 ASD 的认识;促进对 ASD 筛查、诊断和治疗工具的研究和采用;了解资源较少国家的自闭症患者的具体医疗保健需求;并进行纵向研究,以了解 ASD 的终身健康、社会和经济影响,并能够评估增加医疗保健获取的新方法。影响:尽管证据越来越多,但我们对自闭症患者在医疗保健方面遇到的障碍的理解仍然有限,特别是在儿童期之后和资源较少的国家。我们描述了自闭症患者在整个生命周期中遇到的当前和新出现的医疗保健获取障碍。我们建议利益相关者制定基于证据的政策、计划和技术,以解决自闭症患者获得医疗保健的障碍,并考虑广泛、公平的实施,以最大限度地发挥影响。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ff84/7993081/42b99d7a4d84/41390_2021_1465_Fig1_HTML.jpg

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