Anna Lena Fisse1, Jeremias Motte2, Thomas Grüter2, Felix Kohle3, Cornelius Kronlage4, Jan-Hendrik Stahl4, Natalie Winter4, Tabea Seeliger5, Stefan Gingele5, Frauke Stascheit6, Benjamin Hotter6, Juliane Klehmet7, Karsten Kummer8, Elena K Enax-Krumova9, Dietrich Sturm10, Thomas Skripuletz5, Jens Schmidt8,11,12, Min-Suk Yoon13, Kalliopi Pitarokoili2, Helmar C Lehmann3, Alexander Grimm4. 1. Klinik für Neurologie des St. Josef-Hospitals, Katholisches Klinikum Bochum, Universitätsklinikum der Ruhr-Universität Bochum, Gudrunstr. 56, 44791, Bochum, Deutschland. anna.fisse@rub.de. 2. Klinik für Neurologie des St. Josef-Hospitals, Katholisches Klinikum Bochum, Universitätsklinikum der Ruhr-Universität Bochum, Gudrunstr. 56, 44791, Bochum, Deutschland. 3. Klinik und Poliklinik für Neurologie, Medizinische Fakultät, Universitätsklinikum Köln, Köln, Deutschland. 4. Klinik für Neurologie mit Schwerpunkt Epileptologie, Hertie-Institut für klinische Hirnforschung, Eberhard-Karls-Universität Tübingen, Tübingen, Deutschland. 5. Klinik für Neurologie mit Klinischer Neurophysiologie, Medizinische Hochschule Hannover, Hannover, Deutschland. 6. Klinik für Neurologie mit Experimenteller Neurologie, Charité Universitätsmedizin Berlin, Berlin, Deutschland. 7. Klinik für Neurologie, Jüdisches Krankenhaus, Berlin, Deutschland. 8. Klinik für Neurologie, Neuromuskuläres Zentrum, Universitätsmedizin Göttingen, Göttingen, Deutschland. 9. Neurologische Universitätsklinik und Poliklinik, BG Universitätsklinikum Bergmannsheil gGmbH Bochum, Ruhr-Universität Bochum, Bochum, Deutschland. 10. Klinik für Neurologie, Agaplesion Bethesda Krankenhaus Wuppertal, Wuppertal, Deutschland. 11. Abteilung Neurologie und Schmerztherapie, Immanuel Klinik Rüdersdorf, Universitätsklinikum der Medizinischen Hochschule Brandenburg Theodor Fontane, Rüdersdorf bei Berlin, Deutschland. 12. Fakultät für Gesundheitswissenschaften Brandenburg, Medizinische Hochschule Brandenburg Theodor Fontane, Rüdersdorf bei Berlin, Deutschland. 13. Klinik für Neurologie, Evangelisches Krankenhaus Hattingen, Hattingen, Deutschland.
Abstract
BACKGROUND: Diagnosis and treatment of patients with immune-mediated neuropathies is challenging due to the heterogeneity of the diseases. OBJECTIVES: To assess similarities and differences in the current care of patients with immune-mediated polyneuropathies in specialized centers in Germany within the German neuritis network "Neuritis Netz". MATERIAL AND METHODS: We conducted a cross-sectional survey of nine neurological departments in Germany that specialize in the care of patients with immune-mediated neuropathies. We assessed the diagnosis, the approach to diagnostic work-up and follow-up, typical symptoms at manifestation and progression of the disease, and treatment data. RESULTS: This report includes data from 1529 patients per year treated for immune-mediated neuropathies, of whom 1320 suffered from chronic inflammatory demyelinating polyneuropathy (CIDP). Diagnostic work-up almost always included nerve conduction studies, electromyography, and lumbar puncture in accordance with current guidelines. The use of ultrasound, biopsy, and MRI varied. The most important clinical parameter for therapy monitoring in all centers was motor function in the clinical follow-up examinations. A wide range of different immunosuppressants was used for maintenance therapy in about 15% of patients. CONCLUSIONS: These data provide important epidemiological insights into the care of patients with immune-mediated neuropathies in Germany. The further development of specific recommendations for treatment and follow-up examinations is necessary to ensure a uniform standard of patient care. This effort is greatly facilitated by a structured collaboration between expert centers such as Neuritis Netz.
BACKGROUND: Diagnosis and treatment of patients with immune-mediated neuropathies is challenging due to the heterogeneity of the diseases. OBJECTIVES: To assess similarities and differences in the current care of patients with immune-mediated polyneuropathies in specialized centers in Germany within the German neuritis network "Neuritis Netz". MATERIAL AND METHODS: We conducted a cross-sectional survey of nine neurological departments in Germany that specialize in the care of patients with immune-mediated neuropathies. We assessed the diagnosis, the approach to diagnostic work-up and follow-up, typical symptoms at manifestation and progression of the disease, and treatment data. RESULTS: This report includes data from 1529 patients per year treated for immune-mediated neuropathies, of whom 1320 suffered from chronic inflammatory demyelinating polyneuropathy (CIDP). Diagnostic work-up almost always included nerve conduction studies, electromyography, and lumbar puncture in accordance with current guidelines. The use of ultrasound, biopsy, and MRI varied. The most important clinical parameter for therapy monitoring in all centers was motor function in the clinical follow-up examinations. A wide range of different immunosuppressants was used for maintenance therapy in about 15% of patients. CONCLUSIONS: These data provide important epidemiological insights into the care of patients with immune-mediated neuropathies in Germany. The further development of specific recommendations for treatment and follow-up examinations is necessary to ensure a uniform standard of patient care. This effort is greatly facilitated by a structured collaboration between expert centers such as Neuritis Netz.
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