Sickness impact in people with muscular dystrophy:: a longitudinal study over 10 years
Sickness impact in people with muscular dystrophy:: a longitudinal study over 10 years
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DOI：
10.1191/0269215505cr866oa
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发表时间：
2005-09-01
影响因子：
3
通讯作者：
Ahlström, G
中科院分区：
文献类型：
--
作者：
Boström, K;Nätterlund, BS;Ahlström, G
目的：描述不同类型的肌营养不良症成年患者10年来疾病影响方面的功能变化。设计：肌营养不良症患者在1991年和2001年回答了疾病影响概况和自我报告ADL问卷。设置：研究人群在瑞典Orebro县的一项综合患病率研究中确定。研究组由44人组成，根据他们是否患有强直性肌营养不良或肌营养不良伴近端或远端肌肉受累进行分组。主要措施：在两个时间点的功能方面对疾病影响的评估进行比较。随着时间的推移，最明显的恶化是需要手指和手臂力量的日常生活活动。强直性肌营养不良和近端型肌营养不良患者的肌张力显著降低。没有辅助设备的人从91%下降到52%，有残疾养恤金的人从36%上升到55%。有一个相对较小的影响方面的心理社会功能障碍评估的疾病的影响profile.Conclusions：这项纵向研究表明，肌肉萎缩症患者报告的功能恶化。这些知识可用于制定新的干预措施，以便为这一患者群体提供适当的支持和治疗。
Objective: To describe changes of function in terms of sickness impact over 10 years in adult patients with different types of muscular dystrophy.Design: Patients with muscular dystrophy answered the Sickness Impact Profile and Self-report ADL questionnaires in 1991 and 2001.Setting: The study population was identified in a comprehensive prevalence study in the county of Orebro, Sweden.Subjects: The study group comprised 44 people grouped according to whether they had myotonic dystrophy or muscular dystrophy with proximal or distal muscles affected.Main measures: Comparison was made between assessments of sickness impact in terms of function at the two time points.Results: Most obvious deterioration over time was in activities of daily living that require finger and arm strength. Ambulation was significantly decreased in myotonic dystrophy and proximal muscular dystrophy. Those walking without assistive devices decreased from 91% to 52%, and the number with a disability pension increased from 36 to 55%. There was a relatively small influence with regard to psychosocial dysfunction assessed by the Sickness Impact Profile.Conclusions: This longitudinal study shows the deteriorating functions reported by patients with muscular dystrophy. This knowledge could be used to formulate new interventions in order to offer appropriate support and treatment to this patient group.