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. 2022 Dec 7;22(1):455.
doi: 10.1186/s12883-022-02981-y.

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

Maike Stein  1   2   3   4 , Sarah Hoffmann  5   6 , Lea Gerischer  5   6 , Frauke Stascheit  5   6 , David Legg  5   7 , Andreas Meisel  5   6   7   8 , Sophie Lehnerer  5   6   7   8
Affiliations

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

Maike Stein et al. BMC Neurol. .

Abstract

Background and aims: Myasthenia 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.

Methods: Counselling 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.

Results: One 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.

Conclusions: MG 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.

Keywords: Caregiver; Counselling; E-mail; Medical inquiries; Myasthenia gravis; Patient organisation; Social legislation, COVID-19; Specialized care; Unmet needs.

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Conflict of interest statement

M.S. received speaker’s honoraria for attendance at patient events from Argenx. S.H. received speaker’s honoria from Alexion and Argenx, and honoria for attendance at advisory boards from Alexion. S.L. received speaker’s honoraria and honoraria for attendance at advisory boards from Alexion and Argenx. F.S. received speaker’s honoria and honoria for attendance at advisory boards from Alexion. A.M. received speaker’s honoraria from Alexion, Grifols and Hormosan. A.M. received honoraria from Alexion, UCB, MorphoSys and Argenx for consulting services and financial research support from Octapharma and Alexion. A.M. is chairman of the medical advisory board of the German Myasthenia Gravis Society. All other authors report no disclosures relevant to the manuscript.

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