PDF(Pubmed)
Abstract：
There are growing numbers of adults with Duchenne Muscular Dystrophy living well into their fourth decade. These patients have complex medical needs that to date have not been addressed in the International standards of care. We sought to create a consensus based standard of care through a series of multi-disciplinary workshops with specialists from a wide range of clinical areas: Neurology, Cardiology, Respiratory Medicine, Gastroenterology, Endocrinology, Palliative Care Medicine, Rehabilitation, Renal, Anaesthetics and Clinical Psychology. Detailed reports of evidence reviewed and the consensus building process were produced following each workshop and condensed into this final document which was approved by all members of the Adult North Star Network including service users. The aim of this document is to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.
摘要：
越来越多的成年人患有Duchenne肌营养不良症，他们生活在第四个十年。这些患者具有复杂的医疗需求，迄今为止尚未在国际护理标准中得到解决。我们试图通过一系列多学科研讨会与来自广泛临床领域的专家建立基于共识的护理标准：神经病学，心脏病学,呼吸医学,胃肠病学,内分泌学,姑息治疗医学，康复,肾,麻醉学和临床心理学。在每次研讨会之后，都会制作详细的证据报告和建立共识的过程，并将其浓缩为最终文件，该文件已由成人北极星网络的所有成员（包括服务用户）批准。本文件的目的是提供一个框架，以改善患有Duchenne肌营养不良症的成年人的临床服务和多学科护理。
