U Schara1, G R Fink2, A von Moers3. 1. Abteilung für Neuropädiatrie, Entwicklungsneurologie und Sozialpädiatrie, Zentrum für Kinderheilkunde, Klinik für Kinderheilkunde I, Universitätsklinikum Essen, Universität Duisburg-Essen, Hufelandstraße 55, 45122, Essen, Deutschland. ulrike.schara@uk-essen.de. 2. Klinik und Poliklinik für Neurologie, Medizinische Fakultät und Universitätsklinikum Köln, Köln, Deutschland. 3. Klinik für Kinder- und Jugendmedizin, DRK Kliniken Berlin, Berlin, Deutschland.
Abstract
BACKGROUND: 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. OBJECTIVE: How can transition be made meaningful? Where do structural and content problems stand out? MATERIAL AND METHOD: 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. CONCLUSION: 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.
BACKGROUND: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. OBJECTIVE: How can transition be made meaningful? Where do structural and content problems stand out? MATERIAL AND METHOD: 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. CONCLUSION: 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.
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