van de Warrenburg Bart P, Tiemessen Mark, Munneke Marten, Bloem Bastiaan R
Department of Neurology, Radboud University Medical Centre, Centre of Expertise for Parkinson and Movement Disorders, Donders Institute for Brain, Cognition and Behaviour, Nijmegen, Netherlands.
Front Neurol. 2021 Mar 30;12:638853. doi: 10.3389/fneur.2021.638853. eCollection 2021.
In this paper, we present a universal model for implementing network care for persons living with chronic diseases, specifically those with rare movement disorders. Building on our longstanding experience with ParkinsonNet, an integrated care network for persons living with Parkinson's disease or a form of atypical parkinsonism, we provide a series of generic, supportive building blocks to (re)design comparable care networks. We discuss the specific challenges related to rare movement disorders and how these challenges can inform a tailored implementation strategy, using the basic building blocks to offer practical guidance. Lastly, we identify three main priorities to facilitate network development for these rare diseases. These include the clustering of different types of rare movement disorders at the network level, the implementation of supportive technology, and the development of interdisciplinary guidelines.
在本文中，我们提出了一个为慢性病患者，特别是患有罕见运动障碍的患者实施网络护理的通用模型。基于我们在帕金森网（ParkinsonNet）的长期经验，这是一个为帕金森病或非典型帕金森症患者提供综合护理的网络，我们提供了一系列通用的支持性构件，用于（重新）设计类似的护理网络。我们讨论了与罕见运动障碍相关的具体挑战，以及这些挑战如何为量身定制的实施策略提供信息，并利用这些基本构件提供实际指导。最后，我们确定了促进这些罕见疾病网络发展的三个主要优先事项。这些包括在网络层面将不同类型的罕见运动障碍进行聚类、支持性技术的实施以及跨学科指南的制定。
