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患有脑瘫的年轻人的生活质量。

Quality of life in young adults with cerebral palsy.

作者信息

Jiang Benran, Walstab Janet, Reid Susan M, Davis Elise, Reddihough Dinah

机构信息

Developmental Medicine, The Royal Children's Hospital, 50 Flemington Road, Parkville, Victoria 3052, Australia; Department of Paediatrics, University of Melbourne, 50 Flemington Road, Parkville, Victoria 3010, Australia.

Department of Paediatrics, University of Melbourne, 50 Flemington Road, Parkville, Victoria 3010, Australia; Developmental Disability & Rehabilitation Research, Murdoch Childrens Research Institute, 50 Flemington Road, Parkville, Victoria 3052, Australia.

出版信息

Disabil Health J. 2016 Oct;9(4):673-81. doi: 10.1016/j.dhjo.2016.04.006. Epub 2016 May 3.

Abstract

BACKGROUND

Little is known about the quality of life (QOL) of young adults with cerebral palsy.

OBJECTIVE/HYPOTHESIS: This cross-sectional analysis compares the QOL of a cohort of young Australian adults with CP with a cohort of able-bodied peers to explore the relationship between QOL and impairments, functioning, and social participation.

METHODS

Young adults identified from the Victorian Cerebral Palsy Register were invited to complete a survey about QOL, gross motor function, independence in self-care, and social participation. QOL was assessed with the Quality of Life Instrument for Young Adults (YAQOL). A general population sample of young North American adults, who had completed the YAQOL was selected for comparison.

RESULTS

Surveys and consent forms were completed by 335 young adults or their proxies, an overall participation rate of 63% of those located. The mean age of the study participants was 24.7 [s.d = 2.8] years; 51% were male and 49% female. Two hundred and seven (62%) of the 335 participants self-reported their QOL. When compared with the general population sample, self-reporting participants had similar QOL scores for the social relationship and environmental context domains (p > 0.05), while QOL scores were lower for the physical health, psychological well-being, and role function domains (p < 0.001). There was no association between psychological well-being and variables related to body structure and gross motor function in young adults with CP.

CONCLUSIONS

Contrary to the assumption that young adults with severe CP have low psychosocial well-being, it is apparent that these individuals can have good psychosocial well-being regardless of their disability.

摘要

背景

关于患有脑瘫的年轻人的生活质量(QOL),人们所知甚少。

目的/假设:本横断面分析比较了一群患有脑瘫的澳大利亚年轻成年人与一群健全同龄人之间的生活质量,以探讨生活质量与损伤、功能及社会参与之间的关系。

方法

从维多利亚脑瘫登记处识别出的年轻成年人被邀请完成一项关于生活质量、粗大运动功能、自我护理独立性和社会参与的调查。生活质量采用《青年生活质量量表》(YAQOL)进行评估。选取完成了YAQOL的北美年轻成年人的一般人群样本进行比较。

结果

335名年轻成年人或其代理人完成了调查问卷和同意书,总体参与率为找到的人的63%。研究参与者的平均年龄为24.7岁[标准差=2.8];51%为男性,49%为女性。335名参与者中有207名(62%)自行报告了他们的生活质量。与一般人群样本相比,自行报告的参与者在社会关系和环境背景领域的生活质量得分相似(p>0.05),而在身体健康、心理健康和角色功能领域的生活质量得分较低(p<0.001)。患有脑瘫的年轻成年人的心理健康与与身体结构和粗大运动功能相关的变量之间没有关联。

结论

与严重脑瘫的年轻人心理社会幸福感较低的假设相反,显然这些个体无论其残疾状况如何,都可以拥有良好的心理社会幸福感。

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