Myasthenia Gravis: utilising cross-platform quantitative content analysis to uncover and validate unmet needs.

Background

Recent years have seen a rapid growth in the number of online health communities targeted at patients with long-term conditions. Myasthenia Gravis (MG) is a rare neurological disease for which such communities have not been analysed before. The aim of this study was to better understand the needs of the MG population through the collation and categorisation of questions that users of MG social media were asking fellow users on these platforms.

Methodology

Systematic observation of four MG Facebook groups was conducted over a 2-month period. Groups were selected for analysis based on the following systematic criteria: Language (English), Membership (≥ 5,000 members), group activity (≥ 2 posts per week), target audience (general MG population) and researcher engagement with group administrators. The study protocol was reviewed by the institutional review board of the Charité-Universitätsmedizin Berlin (EA2/106/22). During the observation period, data were extracted from individual posts featuring questions made across each group using a systematic and objective coding scheme. All data points were coded directly from the source and collated into an SPSS database (IBM SPSS V.27, SPSS). Absolute and relative frequencies were calculated for categorical variables and proportions were compared across groups to validate the credibility and relevance of different requests.

Results

Of the 2,062 posts observed (

Conclusion

Members of the MG population make active use of online health communities to seek and discuss practical information concerning various aspects of the disease, its diagnosis and care. The openness and willingness of the sample population to share sensitive medical information shows a high need for information not entirely catered to by the medical profession.

Informations de copyright

Copyright © 2024 Legg, Meisel, Stein, Gerischer, Herdick, Krüger, Mergenthaler, Masanneck and Lehnerer.

Déclaration de conflit d'intérêts

SL has received speakers’ honoraria from Alexion, Argenx, Hormosan and UCB and honoraria for attendance at advisory boards from Alexion, Argenx, Biogen, UCB and Roche. MS has received speaker’s honoraria and honoraria for attendance at advisory boards from Argenx and Alexion. AM has received speaker or consultancy honoraria or financial research support (paid to his institution) from Alexion Pharmaceuticals, Argenx, Axunio, Destin, Grifols, Hormosan Pharma, Janssen, Merck, Octapharma, UCB, and Xcenda. AM serves as medical advisory board Chairman of the German Myasthenia Gravis Society. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.