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医疗保健障碍预示着无智力残疾的自闭症成年人与健康相关的生活质量会降低。

Barriers to healthcare predict reduced health-related quality of life in autistic adults without intellectual disability.

作者信息

David Nicole, Rahlff Pascal, König Hannah, Dückert Sophia, Gewohn Petia, Erik Frank, Vogeley Kai, Schöttle Daniel, Konnopka Alexander, Schulz Holger, Peth Judith

机构信息

University Medical Center Hamburg-Eppendorf, Germany.

University of Cologne, Germany.

出版信息

Autism. 2025 Feb;29(2):476-489. doi: 10.1177/13623613241275406. Epub 2024 Sep 11.

Abstract

Health-related quality of life reflects a person's perspective on their well-being in physical, mental, social, work-related, and other aspects of health or life. Autistic adults typically report difficulties in many or all of these domains and, thus, often experience their health-related quality of life being reduced. Nonetheless, they do not obtain the professional support they need and report barriers to accessing or receiving appropriate healthcare. We know little about the impact of barriers to healthcare on health-related quality of life in autistic adults. In the present study, 311 autistic adults without intellectual disability in Germany completed an online survey on their current health-related quality of life and the number of barriers to healthcare they experience. In addition, they were asked about their personal and clinical background as well as about the amount of healthcare and support they recently received. We investigated how this information and, particularly, barriers to healthcare explained variations in individual levels of health-related quality of life. We found that barriers to healthcare, compared to most other variables, were a strong predictor of health-related quality of life: The more barriers autistic adults reported, the lower their experienced psychological and physical well-being. To our knowledge, this is the first paper to examine the relationship between barriers to healthcare and health-related quality of life in autism. Our results suggest that healthcare providers need to become aware of the barriers individuals with autism have in seeking and getting healthcare. Improved access to services might contribute to better health-related quality of life in autistic adults.

摘要

与健康相关的生活质量反映了一个人对其在身体、心理、社会、工作相关以及健康或生活其他方面的幸福感的看法。成年自闭症患者通常在许多或所有这些领域都存在困难,因此,他们的健康相关生活质量常常下降。尽管如此,他们并未获得所需的专业支持,并且报告了在获得或接受适当医疗保健方面存在障碍。我们对医疗保健障碍对成年自闭症患者健康相关生活质量的影响知之甚少。在本研究中,德国311名无智力障碍的成年自闭症患者完成了一项关于他们当前健康相关生活质量以及他们所经历的医疗保健障碍数量的在线调查。此外,他们还被问及个人和临床背景以及他们最近获得的医疗保健和支持的数量。我们研究了这些信息,特别是医疗保健障碍如何解释个体健康相关生活质量水平的差异。我们发现,与大多数其他变量相比,医疗保健障碍是健康相关生活质量的一个强有力的预测指标:成年自闭症患者报告的障碍越多,他们所体验到的心理和身体健康状况就越低。据我们所知,这是第一篇研究自闭症患者医疗保健障碍与健康相关生活质量之间关系的论文。我们的结果表明,医疗保健提供者需要意识到自闭症患者在寻求和获得医疗保健方面存在的障碍。改善服务获取可能有助于提高成年自闭症患者的健康相关生活质量。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/cb38/11816468/e904d475a0a6/10.1177_13623613241275406-fig1.jpg

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