ArticleBMC neurology2022
Myasthenia gravis - a retrospective analysis of e-mail inquiries made to a patient organisation and specialized center to uncover unmet needs from patients and caregivers.
Article in BMC neurology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 9 citations in OpenAlex.
- Remote Monitoring in Myasthenia Gravis: Exploring Symptom Variability.Annals of clinical and translational neurology · 2026Trial
- Telemedical communication patterns in myasthenia gravis in a remote monitoring study.Neurological research and practice · 2026Article
- The telemedical platform MyaLink for remote monitoring in myasthenia gravis - rationale and protocol for a proof of concept study.Journal of neuromuscular diseases · 2026Article
- App- and Wearable-Based Remote Monitoring for Patients With Myasthenia Gravis and Its Specialists: Feasibility and Usability Study.JMIR formative research · 2025Article
- Myasthenia Gravis: utilising cross-platform quantitative content analysis to uncover and validate unmet needs.Frontiers in neurology · 2024Article
- The burden of myasthenia gravis - highlighting the impact on family planning and the role of social support.Frontiers in neurology · 2023Article
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Authors and funding
7 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
aimsMyasthenia Gravis requires expert treatment from specialized neurologists. In Germany, this treatment is mainly provided by 18 Integrated Myasthenia Centers (iMZ) accredited by the German Myasthenia Gravis Association (DMG). The DMG is a large and well-organized patient organisation that is regarded as a trusted source for disease-specific information. The aim of this study was to analyse the type of requests that each of these institutions receives in order to identify any potential unmet needs regarding the availability of advice for patients and caregivers. This data can then be used in further research to tailor modern digital communication tools to the specific needs of MG patients.
methodsCounselling requests sent via e-mail to both institutions were extracted for defined examination periods and divided into a period 'before COVID-19 pandemic' (01.07.2019-31.12.2019) and 'during COVID-19 pandemic' (01.07.2020-31.12.2020). Requests were then analysed using four main categories: medical requests, organisational issues, COVID-19 and social legislation inquiries.
resultsOne thousand seven hundred eleven requests for advice were addressed to DMG and iMZ Charité. Most inquiries directed to the DMG (47%; n = 750) were related to medical issues, most frequently to side effects of medications (n = 325; 20%) and questions about treatment (n = 263; 16%), followed by inquiries regarding organisational issues (26%; n = 412). About half of the inquiries (n = 69; 58%) to the iMZ Charité were related to medical issues and almost one in three inquiries concerned organisational issues (n = 37; 30%). About one in ten inquiries concerned socio-legal matters (iMZ: n = 7; 6% and DMG: n = 177; 11%). During the pandemic, COVID-19 related issues accounted for 8% (n = 6) of inquiries at iMZ, and 16% (n = 253) at DMG.
conclusionsMG sufferers have a high demand for timely advice. In the current setting, they address their requests to both iMZs and the DMG via e-mail. Our findings confirm that the DMG is highly trusted by patients and caregivers and is used to obtain second opinions. A relevant proportion of requests to the iMZ could be answered more effectively through standardized responses or improved process management. The implementation of modern digital solutions, including telemedicine, for communication between patient and specialist should be evaluated in further research.
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