New trends in understanding the burden of migraine: Semantic analysis of the voice of Russian patients - Users of Web 2.0

Abstract

Migraine is the second leading cause of disability, and the burden of migraine is determined, among other things, 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 their 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 (automatic analysis of natural language texts taking into account their meaning) of anonymized posts from 6,566 patients and their caregivers from social networking websites and forums (over 73 thousand messages posted between 2010 and 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 gender was determined based on the text of the analyzed message. Only open data from the Internet from social networks and forums were used for this study. Results and discussion. A landscape of problems of persons complaining of migraine issues was formed Factors affecting the quality of life (QoL) were combined in 4 main groups (“Restrictions imposed on lifestyle by triggers of migraine attacks”, “Loss of work capacity”, “Serious psychological problems”, “Family planning issues”); additional, rarer, but acute problems were identified as well. The results show that the average number of days with migraine is 9.4 per month; 21.8% of patients report daily migraine; most of 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 seek additional examinations on their own, while only 13.1% of patients had experience of adequate preventive therapy. Conclusion. The study revealed the presence of a wide range of unmet needs, QoL 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 migraine therapy costs) based on the text of migraine-associated messages in open sources on the Internet.