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肌营养不良患者的日常生活活动与生活质量

Activities of daily living and quality of life in persons with muscular dystrophy.

作者信息

Nätterlund B, Ahlström G

机构信息

Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala University, Sweden.

出版信息

J Rehabil Med. 2001 Sep;33(5):206-11. doi: 10.1080/165019701750419590.

Abstract

The study concerns 77 adults with muscular dystrophy (mean age 49 years) in two counties in Sweden. The purpose was to investigate activities of daily living, quality of life and the relationship between these. Data collection was performed with "the Activity of Daily Living Staircase", "the Self-report Activity of Daily Living" and the Quality of Life Profile. The results indicated that over half of the subjects were dependent on others, chiefly in activities requiring mobility. Muscular dystrophy had mostly negative consequences, and nearly half stated that life would have offered more without it. Few significant diagnosis-related (no gender-related) differences emerged regarding activities of daily living and quality of life. Lower quality of life can only partly be explained by greater disability (r=0.30-0.54). Therefore quality of life as a measurement of rehabilitation outcomes might be based both on physical status, disability and psychosocial factors in terms of positive and negative consequences.

摘要

该研究涉及瑞典两个县的77名成年肌肉萎缩症患者(平均年龄49岁)。目的是调查日常生活活动、生活质量以及二者之间的关系。使用“日常生活楼梯活动量表”、“自我报告日常生活活动量表”和“生活质量概况量表”进行数据收集。结果表明,超过半数的受试者依赖他人,主要是在需要行动能力的活动方面。肌肉萎缩症大多产生负面后果,近半数受试者表示若没有此病生活本可更美好。在日常生活活动和生活质量方面,几乎未出现与诊断相关(无性别相关)的显著差异。生活质量较低只能部分地归因于残疾程度较高(r = 0.30 - 0.54)。因此,作为康复结果衡量指标的生活质量可能既基于身体状况、残疾程度,也基于心理社会因素所带来的正负两方面后果。

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