The Care Committee of the Mukoviszidose e.V., headed by Cornelia Meyer, has drawn up a completely revised version of the German Guidelines to Care in Cystic Fibrosis. It addresses all nursing staff concerning children, adolescents or adults with cystic fibrosis (CF) either in an inpatient and outpatient setting or in rehab clinics. The guidelines evolve along with the increased life expectancy of cystic fibrosis patients and improved quality of life which is described by CF patients and can be observed by the therapeutic CF team. For example, the treatment of secondary diseases like CFDR (CF related diabetes) which comes along with an increased life expectancy has been added over the years. It is essential that within such a complex disease pattern, professional experience of care staff who worked in specialized CF care centers (50+ patients per year) for many years has to be transferred to other nursing stuff or beginners. This is especially important in the context of the heterogeneous characteristics of this disease. Often it can be seen that the quality of the care for CF patients depends on the know-how and professional experience of the interdisciplinary CF therapists team. Moreover, it depends on the knowledge which the patient has gathered by himself by experience or learning. And, of course, it depends also on the knowledge of the relatives especially parents or partner respectively.
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