迈向1型强直性肌营养不良综合管理方法
Towards an integrative approach to the management of myotonic dystrophy type 1.
作者信息
Gagnon Cynthia, Noreau Luc, Moxley Richard T, Laberge Luc, Jean Stéphane, Richer Louis, Perron Michel, Veillette Suzanne, Mathieu Jean
机构信息
Neuromuscular Clinic, Centre de Réadaptation en Déficience Physique de Jonquière, Jonquière, Québec, Canada.
出版信息
J Neurol Neurosurg Psychiatry. 2007 Aug;78(8):800-6. doi: 10.1136/jnnp.2006.107185. Epub 2007 Apr 20.
Abstract
Myotonic dystrophy type 1 (DM1) is the most common type of muscular dystrophy in adults. Approximately 60% of individuals report either having difficulty performing or being unable to carry out some activities related to home management, mobility and transportation, work and leisure. Employment, educational level and income are, on average, lower than in the general population. The complexity and variability of disease manifestations in DM1 undoubtedly pose a challenge as regards anticipating all potential problems and developing a plan for health and community management. This article presents a conceptual model for DM1 management as well as a brief discussion of an approach for developing interdisciplinary health and community services.
摘要
1型强直性肌营养不良（DM1）是成人中最常见的肌营养不良类型。约60%的患者表示在进行与家庭管理、移动和交通、工作及休闲相关的某些活动时存在困难或无法开展这些活动。平均而言，患者的就业情况、教育水平和收入低于普通人群。DM1疾病表现的复杂性和变异性无疑给预测所有潜在问题以及制定健康和社区管理计划带来了挑战。本文提出了一个DM1管理的概念模型，并简要讨论了一种发展跨学科健康和社区服务的方法。
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