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杜氏肌营养不良症的诊断与管理,第 2 部分:多学科护理的实施。

Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care.

机构信息

Institute of Human Genetics, Newcastle University, Newcastle upon Tyne, UK.

出版信息

Lancet Neurol. 2010 Feb;9(2):177-89. doi: 10.1016/S1474-4422(09)70272-8. Epub 2009 Nov 27.

Abstract

Optimum management of Duchenne muscular dystrophy (DMD) requires a multidisciplinary approach that focuses on anticipatory and preventive measures as well as active interventions to address the primary and secondary aspects of the disorder. Implementing comprehensive management strategies can favourably alter the natural history of the disease and improve function, quality of life, and longevity. Standardised care can also facilitate planning for multicentre trials and help with the identification of areas in which care can be improved. Here, we present a comprehensive set of DMD care recommendations for management of rehabilitation, orthopaedic, respiratory, cardiovascular, gastroenterology/nutrition, and pain issues, as well as general surgical and emergency-room precautions. Together with part 1 of this Review, which focuses on diagnosis, pharmacological treatment, and psychosocial care, these recommendations allow diagnosis and management to occur in a coordinated multidisciplinary fashion.

摘要

优化杜氏肌营养不良症(DMD)的管理需要采取多学科方法,重点是采取预期和预防措施,以及积极干预,以解决疾病的主要和次要方面。实施综合管理策略可以有利地改变疾病的自然病程,改善功能、生活质量和寿命。标准化的护理还可以促进多中心试验的计划,并有助于确定需要改进的护理领域。在这里,我们提出了一套全面的 DMD 护理建议,用于管理康复、矫形、呼吸、心血管、胃肠病/营养和疼痛问题,以及一般外科和急诊室预防措施。与本综述的第 1 部分一起,重点关注诊断、药物治疗和心理社会护理,这些建议允许以协调的多学科方式进行诊断和管理。

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