Department of Translational Medicine (DIMET), Università del Piemonte Orientale, 28100 Novara, Italy.
European Pathway Association, 3000 Leuven, Belgium.
Int J Environ Res Public Health. 2021 Nov 4;18(21):11591. doi: 10.3390/ijerph182111591.
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.
重症肌无力（MG）是一种慢性、终身性疾病，需要不同专业和学科之间的高度协调。MG 的诊断常常被延误，有时甚至被误诊。护理途径（CP）的目标是为医疗保健增加价值，减少不必要的差异。使用 CP 可以使患有 MG 的患者获得更好的护理质量。我们进行了一项研究，旨在为 MG 的诊断、治疗和护理制定一个包容、全面和多学科的 CP。该模型 CP 的开发、关键干预措施和流程指标是基于文献回顾和 85 名国际 MG 专家的评估，通过德尔菲研究表达了相关性判断。该模型 CP 包括 60 项活动，并由 MG 专家进行了有效性和可行性评估。这 60 项活动随后被转化为 14 项关键干预措施和 24 项流程指标。我们相信，所开发的模型 CP 将有助于 MG 患者及时得到诊断，并获得高质量、可及且具有成本效益的治疗和护理。我们还相信，为其他罕见疾病制定模型 CP 是可行的，并有助于将循证知识融入临床实践。
