PDF(Pubmed)
Abstract：
Myasthenia Gravis (MG) is a chronic, life-lasting condition that requires high coordination among different professionals and disciplines. The diagnosis of MG is often delayed and sometimes misdiagnosed. The goal of the care pathway (CP) is to add value to healthcare reducing unnecessary variations. The quality of the care received by patients affected with MG could benefit from the use of CP. We conducted a study aimed to define an inclusive, comprehensive, and multidisciplinary CP for the diagnosis, treatment, and care of MG. The development of the model CP, key interventions, and process indicators is based on the literature review and 85 international MG experts were involved in their evaluation, expressing a judgment of relevance through the Delphi study. 60 activities are included in the model CP and evaluated by the MG experts were valid and feasible. The 60 activities were then translated into 14 key interventions and 24 process indicators. We believe that the developed model CP will help for MG patients to have a timely diagnosis and high-quality, accessible, and cost-effective treatments and care. We also believe that the development of model CPs for other rare diseases is feasible and could aid in the integration of evidence-based knowledge into clinical practice.
摘要：
重症肌无力(MG)是一种慢性,需要不同专业人员和学科之间高度协调的持久状态。MG的诊断常延迟，有时误诊。护理途径（CP）的目标是为医疗保健增加价值，减少不必要的变化。患有MG的患者接受的护理质量可以从CP的使用中受益。我们进行了一项研究，旨在定义一个包容性的，全面,和诊断的多学科CP，治疗,照顾MG。CP模型的发展，关键干预措施，和过程指标基于文献综述，85名国际MG专家参与了他们的评估，通过德尔菲研究表达相关性判断。CP模型中包含60项活动，并由MG专家进行评估是有效和可行的。60项活动随后转化为14项关键干预措施和24项过程指标。我们认为，开发的CP模型将有助于MG患者及时诊断，高质量，可访问,以及具有成本效益的治疗和护理。我们还认为，开发其他罕见疾病的CPs模型是可行的，可以帮助将循证知识整合到临床实践中。
