Aspects of quality of life in adults diagnosed with autism in childhood A population-based study
Aspects of quality of life in adults diagnosed with autism in childhood A population-based study
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DOI：
10.1177/1362361309346066
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发表时间：
2011-01-01
期刊：
影响因子：
5.2
通讯作者：
Gillberg, Christopher
中科院分区：
文献类型：
--
作者：
Billstedt, Eva;Gillberg, I. Carina;Gillberg, Christopher
本研究是一项对120名儿童时期被诊断为自闭症的人群队列进行的长期前瞻性随访研究，随访至青春期晚期/成年早期。该研究的具体目的是尝试测量和研究在随访时（初次诊断后13 - 22年）存活且可用于研究的108名自闭症患者的社会方面/生活质量。一种新构建的用于评估“对自闭症友好的环境”/生活质量的量表与结构化的家长/照顾者访谈一起使用，访谈内容包括评估当前职业、教育经历、所提供的服务、居住类型和娱乐活动。大多数自闭症患者群体在教育、居住和职业情况方面仍然依赖父母/照顾者的支持。尽管如此，对研究组总体生活质量的评估令人鼓舞地呈现积极态势。然而，在职业和娱乐活动方面显然需要改进。未来的研究需要更深入地研究对自闭症友好的环境这一概念，并开发更详细的与自闭症谱系人群相关的生活质量评估工具。
The present study is a long-term prospective follow-up study of a population-based cohort of 120 individuals diagnosed with autism in childhood, followed into late adolescence/early adulthood. Specific aims of the study were to attempt to measure and study social aspects/quality of life in those 108 individuals with autism alive and available for study at the time of follow-up (13-22 years after original diagnosis). A newly constructed scale for rating 'autism-friendly environment'/quality of life was used alongside a structured parent/carer interview assessing current occupation, educational history, services provided, accommodation type, and recreational activities. The majority of the group with autism remained dependent on parents/caregivers for support in education, accommodation and occupational situations. In spite of this, the estimation of the study group's general quality of life was encouragingly positive. Nevertheless, there was an obvious need for improvements in the areas of occupation and recreational activities. Future studies need to look in more depth at the concept of an autism-friendly environment and develop more detailed quality of life assessment tools relevant for people in the autism spectrum.