Schara U, Fink G R, von Moers A
Abteilung für Neuropädiatrie, Entwicklungsneurologie und Sozialpädiatrie, Zentrum für Kinderheilkunde, Klinik für Kinderheilkunde I, Universitätsklinikum Essen, Universität Duisburg-Essen, Hufelandstraße 55, 45122, Essen, Deutschland.
Klinik und Poliklinik für Neurologie, Medizinische Fakultät und Universitätsklinikum Köln, Köln, Deutschland.
Nervenarzt. 2018 Oct;89(10):1123-1130. doi: 10.1007/s00115-018-0585-2.
Neuromuscular diseases in childhood, adolescence and adulthood are rare or very rare diseases and for many of them the prevalence and incidence are unknown. Causal therapies are currently used for individual disease entities only. Nevertheless, new genetic methods, a better understanding of the pathophysiology and multidisciplinary treatment concepts help to improve patient life expectancy and quality of life. As a result, more and more patients with an early disease onset reach adulthood and further care in adult medicine is necessary. This imposes new challenges particularly on neurology and the requirements for interdisciplinary cooperation in adult medicine are increased.
How can transition be made meaningful? Where do structural and content problems stand out?
Using the example of Duchenne muscular dystrophy, the content and structural requirements for transition are presented and important aspects and possible problems are pointed out.
The transition process is complex and requires time and personnel resources. If carried out sensibly, it can lead to a better and more efficient care of patients in the long term and thus can also become economically more effective.
儿童、青少年及成人期的神经肌肉疾病属于罕见病或极罕见病,其中许多疾病的患病率和发病率尚不清楚。目前,病因疗法仅用于个别疾病实体。然而,新的基因方法、对病理生理学的更好理解以及多学科治疗理念有助于提高患者的预期寿命和生活质量。因此,越来越多疾病早发的患者步入成年期,需要成人医学提供进一步的护理。这尤其给神经病学带来了新挑战,同时也增加了成人医学跨学科合作的要求。
如何使过渡变得有意义?结构和内容问题出现在哪些方面?
以杜氏肌营养不良症为例,阐述过渡的内容和结构要求,并指出重要方面和可能存在的问题。
过渡过程复杂,需要时间和人力资源。如果合理实施,从长远来看,它可以为患者带来更好、更高效的护理,从而在经济上也更具效益。