C Heesen1,2, R Haase3, S Melzig3, J Poettgen1,2, M Berghoff4, F Paul5, U Zettl6, M Marziniak7, K Angstwurm8, R Kern3, T Ziemssen3, J P Stellmann1,2. 1. Institut für Neuroimmunologie und Multiple Sklerose, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. 2. Klinik und Poliklinik für Neurologie, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. 3. Zentrum für klinische Neurowissenschaften, Klinik und Poliklinik für Neurologie, Universitätsklinikum Carlk Gustav Carus, Dresden, Germany. 4. Department of Neurology, Justus-Liebig University Giessen, Giessen, Germany. 5. NeuroCure Clinical Research Center and Experimental and Clinical Research Center, Clinical and Experimental Multiple Sclerosis Research Center, Department of Neurology, Charité - Universitätsmedizin Berlin, Berlin, Germany. 6. Zentrum für Nervenheilkunde, Klinik und Poliklinik für Neurologie, Universitätsmedizin Rostock, Rostock, Germany. 7. Neurologie, kbo-Isar-Amper-Klinikum, Haar, Germany. 8. Klinik und Poliklinik für Neurologie der Universität Regensburg am Bezirksklinikum Regensburg, Regensburg, Germany.
Abstract
BACKGROUND: In neurological diseases presenting with a plethora of symptoms, the value of bodily functions for a given patient might be a guide for clinical management. Multiple sclerosis (MS) is paradigmatic in this respect, and little is known about the value of different bodily functions of patients and their physicians' perceptions. METHODS: In a multicenter study, 171 patients with relapsing-remitting multiple sclerosis (RRMS), 61% with a clinically active disease within the last 2 years were followed over up to 3 years and yearly patients and their study physician rated on the perceived value of 13 bodily functions via a priority list. Differences between patients and physicians as well as modulating disease demographic factors were analyzed. RESULTS: Patients with RRMS rated visual function followed by thinking and memory and walking highest while physicians stressed mobility, followed by thinking and memory and alertness most. Ratings were independent from disease duration or disability. Strongest value judgment differences were seen in swallowing regarded more relevant by patients and hand function regarded more relevant by physicians. In general, patients' and physicians' ratings through time were quite stable. Collapsing physical items into a physical functioning scale and mental items in a mental function scale, both dimensions were regarded equally important by patients while physicians underscored physical functioning (P = .016). CONCLUSION: There are differences between patients and physicians in value statements of bodily functions in MS. In particular, visual functioning is under-recognized by physicians.
BACKGROUND: In neurological diseases presenting with a plethora of symptoms, the value of bodily functions for a given patient might be a guide for clinical management. Multiple sclerosis (MS) is paradigmatic in this respect, and little is known about the value of different bodily functions of patients and their physicians' perceptions. METHODS: In a multicenter study, 171 patients with relapsing-remitting multiple sclerosis (RRMS), 61% with a clinically active disease within the last 2 years were followed over up to 3 years and yearly patients and their study physician rated on the perceived value of 13 bodily functions via a priority list. Differences between patients and physicians as well as modulating disease demographic factors were analyzed. RESULTS:Patients with RRMS rated visual function followed by thinking and memory and walking highest while physicians stressed mobility, followed by thinking and memory and alertness most. Ratings were independent from disease duration or disability. Strongest value judgment differences were seen in swallowing regarded more relevant by patients and hand function regarded more relevant by physicians. In general, patients' and physicians' ratings through time were quite stable. Collapsing physical items into a physical functioning scale and mental items in a mental function scale, both dimensions were regarded equally important by patients while physicians underscored physical functioning (P = .016). CONCLUSION: There are differences between patients and physicians in value statements of bodily functions in MS. In particular, visual functioning is under-recognized by physicians.
Authors: Arzu C Has Silemek; Jean-Philippe Ranjeva; Bertrand Audoin; Christoph Heesen; Stefan M Gold; Simone Kühn; Martin Weygandt; Jan-Patrick Stellmann Journal: Hum Brain Mapp Date: 2021-04-07 Impact factor: 5.038
Authors: Celia Oreja-Guevara; Stanca Potra; Birgit Bauer; Diego Centonze; Maria-Paz Giambastiani; Gavin Giovannoni; Jürg Kesselring; Dawn Langdon; Sarah A Morrow; Jocelyne Nouvet-Gire; Maija Pontaga; Peter Rieckmann; Sven Schippling; Nektaria Alexandri; Jane Shanahan; Heidi Thompson; Pieter Van Galen; Patrick Vermersch; David Yeandle Journal: Adv Ther Date: 2019-09-05 Impact factor: 3.845
Authors: Lisa-Marie Ohle; David Ellenberger; Peter Flachenecker; Tim Friede; Judith Haas; Kerstin Hellwig; Tina Parciak; Clemens Warnke; Friedemann Paul; Uwe K Zettl; Alexander Stahmann Journal: Sci Rep Date: 2021-06-25 Impact factor: 4.379
Authors: José Meca-Lallana; Jorge Maurino; Miguel Ángel Hernández-Pérez; Ángel P Sempere; Luis Brieva; Elena García-Arcelay; María Terzaghi; Gustavo Saposnik; Javier Ballesteros Journal: Neurol Ther Date: 2020-01-18