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Myasthenia gravis (MG, “severe muscle weakness”) is a rare autoimmune disease that affects 15 to 20 people per 100.000 inhabitants. It leads to fluctuating, exertion-dependent muscle weakness, with huge individual differences in course and severity of the disease – therefore, myasthenia is also called “snowflake disease” because no patient histories are identical. Often, people with MG face limitations in their activities, both at work and in their private life, as their condition progresses. This is associated with a considerable burden for the people affected. Motor and non-motor symptoms like fatigue or pain lead to a reduced quality of life and psychological well-being. Therefore, the study “Questionnaire-based survey for the systematic assessment and characterisation of limitations in quality of life in myasthenia gravis (MG)” investigated the burden of disease and the individual factors that could have a positive or a negative influence on the quality of life of patients living with MG. The results will build a basis for the development of future long-term treatment plans that have a positive effect on the quality of life of MG patients.

Active patient involvement in the study

Active patient involvement in the study The study was conducted at the NeuroCure Clinical Research Center (NCRC) in close cooperation with the Deutsche Myasthenie Gesellschaft e.V. (DMG; German Myasthenia Society). Representatives of the DMG were actively involved in the planning of the questionnaire as well as in the selection of the items: In digital meetings with the chairperson and other members of the DMG, who are also MG patients, the team first developed the general content, then the topics, and finally concrete questions for the study. It became clear that it was necessary to cover many different aspects to gain a comprehensive understanding of the complex topic “burden of disease”. Therefore, in addition to demographic information and clinical characteristics of the disease, topics such as family situation and social support, working life and economic situation, anxiety and depression as well as quality of life were assessed. The DMG representatives approved the final version of the questionnaire. The survey was anonymous, so that individual persons could not be identified. The questionnaire was sent to the patients together with the study information by mail. In addition, Hans Rohn, the chairperson of the DMG, included a letter to all members that strongly encouraged them to participate in the study.

The results were discussed with the patients in several digital regional group meetings of the DMG: Study results were presented to the patients and in a lively discussion, the relevance was discussed and individual results were put into a more general context.

A first publication of the study was already included in the DMG-Aktuell, the quarterly journal for DMG members. Currently, further subgroup analyses are conducted – after completion, these results will also be presented in the DMG-Aktuell.

Results of the study

Results of the study Of the 3,262 members of the DMG who were invited to participate, 1,660 responded, which is a response rate of more than 50% (1). The high response rate underlines the relevance of the topic for the patients. The results for health-related quality of life were compared with matched controls from the general population (Fig. 1 from: Lehnerer et al., 2021, p. 8; CC BY 4.0).

Results show a reduced quality of life of MG patients compared to the general population. Especially in the categories referring to general vitality and physical functioning, the patients differed, whereas there were no differences in the domains pain and general health. Women showed higher burden and limitations as compared to men. In addition to motor restrictions, other symptoms such as fatigue or lack of sleep and restrictions in working life can occur. The results also show a relationship between perceived social support and limitations in activities of daily living, symptoms of anxiety and depression as well as the general quality of life.

Conclusions and future studies

The results show that treatments should have a stronger focus on psychological in addition to physical symptoms. Recent clinical studies use PROMs (patient-reported outcome measures) as primary and secondary endpoints. This shows clearly the importance of the improvement of perceived symptoms and limitations for the patients. The discussion so far indicated that from the patients’ perspective, the limitations go far beyond motor deficits, and have a high impact on work, family and social life. The latter still do not receive enough attention in current health care. Thus, the data obtained will be used to improve patient care in the future. Further joint projects with the DMG are currently planned, such as the continuous monitoring of PROMs via a digital platform (www.myalink.de).

The article „Burden of disease in myasthenia gravis: taking the patient’s perspective“ (1) received a QUEST Award for Patient & Stakeholder Engagement.


Lehnerer, S., Jacobi, J., Schilling, R., Grittner, U., Marbin, D., Gerischer, L., Stascheit, F., Krause, M., Hoffmann, S. & Meisel, A. (2021). Burden of disease in myasthenia gravis: taking the patient’s perspective. Journal of Neurology. Epub ahead of print. doi: 10.1007/s00415-021-10891-1


Dr. Sophie Lehnerer

Department of Neurology with Experimental Neurology (CCM)

Charité – Universitätsmedizin Berlin

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Phone:+49 30 450 539 724