New in understanding the burden of migraine: semantic analysis of the voice of Russian patients – users of Web 2.0

Migraine is the second leading cause of maladjustment, and the burden of migraine is determined by its impact on work ability, social activity and family relationships.
Objective: to identify the patterns of behavior of Russian patients with migraine, factors affecting their quality of life, and the level of awareness of the disease based on a semantic analysis of messages in Web 2.0.
Patients and methods. The study is based on the results of semantic processing (automated analysis of natural language texts, taking into account their meaning) of anonymized messages from 6566 unique authors (patients and their relatives) from social networks and forums (over 73 thousand messages over 10 years, 2010–2020). In addition, the study was carried out exclusively according to the data indicated in the messages. In this regard, complete data for several parameters was not available for analysis. No personal data about the authors of the messages was collected or used. The sex was determined based on the text of the analyzed message. For the study, only open data from the Internet from social networks and forums was used.
Results and discussion. A landscape of problems of persons complaining of migraine issues was formed. Factors affecting the quality of life were grouped into four main groups (“Lifestyle restrictions by triggers of migraine attacks”, “Loss of opportunity to work”, “Serious psychological problems”, “Family planning issues”); additional, rarer, but acute problems were also identified. The analyzed messages show that the average number of days with migraines is 9.4 per month; 21.8% of patients report daily migraines. Moreover, most patients have been suffering from attacks for 10 years or more, and 9% of patients – for 30 years or more. The analysis of diagnostic patterns showed that in most cases, patients independently resorted to additional examination methods, while only 13.1% of patients had experience of adequate preventive therapy.
Conclusion. The study demonstrated the presence of a wide range of unmet needs, quality of life problems both in patients themselves and their caregivers, as well as a significant social and economic burden of this disease (including a long-term burden on the economy, which can be used as arguments for reimbursing the cost of migraine therapy) based on the text messages on migraine in open sources on the Internet.

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