Mya-BOD: Questionnaire for the Systematic Recording and Characterization of Quality of Life Limitations in the Context of Myasthenia Gravis (MG)
Myasthenia gravis (MG) is a disease that usually stays with a patient for a lifetime. The disease can manifest in numerous ways and comes in differing levels of severity. People living with myasthenia are often forced to accept certain limitations that affect many aspects of their lives, from the work they are capable of, to the way they spend their free time. Our experience in the clinic has made us acutely aware of the difficulties such restrictions can cause for those affected by the illness. For this reason, we have developed the "Questionnaire for the Systematic Recording and Characterization of Quality of Life Limitations in the Context of Myasthenia Gravis (MG)" as a way of assessing the details regarding these ongoing burdens. The questionnaire gived us feedback about which individual factors might be having a positive or negative impact on the lives of those affected by MG. Based on the results of this study, we wanted to develop long-term treatment possibilities that improve the quality of life for patients living with myasthenia gravis.
Principal Investigator: Prof. Dr. med. med. Andreas Meisel (Head of AG Cerebrovascular Diseases, NCRC)
Course of the study: 7.5.2019-31.07.2019
Lehnerer S, Jacobi J, Schilling R, Grittner U, Marbin D, Gerischer L, Stascheit F, Krause M, Hoffmann S, Meisel A. Burden of disease in myasthenia gravis: taking the patient's perspective. J Neurol 2021.
Lehnerer, Sophie, Jonas Jacobi, Ralph Schilling, Ulrike Grittner, Derin Marbin, Lea Gerischer, Frauke Stascheit, Maike Krause, Sarah Hoffmann, and Andreas Meisel. Correction To: Burden of Disease in Myasthenia Gravis: Taking the Patient’s Perspective. Journal of Neurology (1-2. Accessed 2022/08/22.