Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jun 24, 2022
Open Peer Review Period: Jun 22, 2022 - Aug 17, 2022
Date Accepted: Feb 14, 2023
(closed for review but you can still tweet)
Social Media Listening and Digital Profiling Study of People with Headache and Migraine: A Retrospective Infodemiology Study
ABSTRACT
Background:
There is an unmet need for better understanding and management of headache, particularly migraine, in the real world, which may be facilitated using digital technology.
Objective:
The objective of this study was to identify where, when, and how people with headache and migraine describe their symptoms and the non-pharmaceutical and medicinal treatments used as indicated on social media.
Methods:
Social media sources, including Twitter, online forums, blogs, YouTube, and review sites, were searched using a predefined search string related to headache and migraine. The retrospective data from social media posts were collected for a 1-year period from January 01, 2018, to December 31, 2018 (Japan) or a 2-year period from January 01, 2017 to December 31, 2018 (Germany and France). The data were analyzed after collection, using conversational analysis and audience profiling.
Results:
A total of 3,509,828 social media posts related to headache and migraine were obtained from Japan in one year and 146,257 and 306,787 posts from Germany and France, respectively, in two years. Among social media sites, Twitter was the most used platform across these countries. Japanese sufferers used specific terminology, such as “tension headaches” or “cluster headaches” (36%), whereas French sufferers even mentioned specific migraine types, such as ocular (7%) and aura (2%). The most detailed posts on headache or migraine were from Germany. Approximately one-fourth (39.5% [11,304/28,619]) of French sufferers explicitly mentioned “headache or migraine attacks” in the “evening/morning,” whereas 46% (11,304/24,302) of Japanese mentioned “morning”, and 63% (10,790/17,128) of German sufferers mentioned “evening/night”. The use of “generic terms” such as medicine, tablet, and pill were prevalent. The most discussed drugs were ibuprofen and naproxen combination (43%) in Japan; ibuprofen (29%) in Germany; and acetylsalicylic acid, paracetamol, and caffeine combination (75%) in France. The top-three non-pharmaceutical treatments comprised either hydration, caffeinated beverages, or relaxation methods. Of sufferers, 22,281 (39.3%) were between 18 and 24 years of age.
Conclusions:
In this digital era, social media listening studies present an opportunity to provide unguided, self-reported, sufferers’ perceptions in real world. The generation of social media evidence requires appropriate methodology to translate data into scientific information and relevant medical insights. This social media listening study showed country-specific differences in headache and migraine symptoms experienced and in the times of the day and treatments used. Furthermore, this study highlighted the prevalence of social media usage by younger sufferers compared with older sufferers. Clinical Trial: Not applicable
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