Social Media Listening and Digital Profiling Study of People With Headache and Migraine: Retrospective Infodemiology Study.

BACKGROUND: There is an unmet need for a better understanding and management of headache, particularly migraine, beyond specialist centers, 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 nonpharmaceutical and medicinal treatments used as indicated on social media. METHODS: Social media sources, including Twitter, web-based forums, blogs, YouTube, and review sites, were searched using a predefined search string related to headache and migraine. The real-time data from social media posts were collected retrospectively for a 1-year period from January 1, 2018, to December 31, 2018 (Japan), or a 2-year period from January 1, 2017, to December 31, 2018 (Germany and France). The data were analyzed after collection, using content analysis and audience profiling. RESULTS: A total of 3,509,828 social media posts related to headache and migraine were obtained from Japan in 1 year and 146,257 and 306,787 posts from Germany and France, respectively, in 2 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. The French sufferers explicitly mentioned "headache or migraine attacks" in the "evening (41%) or morning (38%)," whereas Japanese mentioned "morning (48%) or night (27%)" and German sufferers mentioned "evening (22%) or night (41%)." 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 3 nonpharmaceutical treatments are hydration, caffeinated beverages, and relaxation methods. Of the sufferers, 44% 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 the 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 to that by older sufferers.

Multinational descriptive analysis of the real-world burden of headache using the Migraine Buddy application.

BACKGROUND AND PURPOSE: A large proportion of headache sufferers do not routinely seek medical care. App-based technologies permit the collection of real-world data over time and between countries that can help assess true burden of headache. This study used a mobile phone application to collect information on the real-world burden of self-diagnosed headache and to describe its impact on daily life in headache sufferers who do not routinely seek medical advice. METHODS: This retrospective, non-interventional, cross-sectional study analysed self-reported data from users of the 'Migraine Buddy' app. The main objective was to describe self-reported characteristics of headache and migraine (triggers, duration, frequency), treatment patterns and impact on daily activity in headache sufferers from Australia, Brazil, France, Germany and Japan. Data including demographics, self-diagnosed episode type (headache/migraine), duration, potential triggers and impact on daily activity are reported. All analyses were exploratory and performed per country. RESULTS: Self-reported data were collected from 60,474 users between August 2016 and August 2018. Approximately 90% of users were females; >60% were aged 24-45 years. Over one-third of users reported having two to five episodes of headache or migraine per month; impact included impaired concentration, being slower and missing work or social activities. Variations across countries were observed; within countries, episode characteristics were very similar for self-diagnosed headache versus migraine. CONCLUSIONS: Headache tracking was used to describe the experience, impact and self-management approaches of migraine and headache sufferers in a real-world setting. Headache disorders present a range of important issues for patients that deserve more study and reinforce the need for better approaches to management.

21st century headache: mapping new territory.

BACKGROUND: With headache experienced by up to 75% of adults worldwide in the last year, primary headache disorders constitute a major public health problem, yet they remain under-diagnosed and under-treated. Headache prevalence and burden is changing as society evolves, with headache now occurring earlier in life. Contributing factors, mostly associated with changing life style, such as stress, bad posture, physical inactivity, sleep disturbance, poor diet and excess use of digital technology may be associated with the phenomenon that could be labelled as '21st century headache'. This is especially notable in workplace and learning environments where headache impacts mental clarity and therefore cognitive performance. The headache-related impact on productivity and absenteeism negatively influences an individual's behaviour and quality of life, and is also associated with a high economic cost. Since the majority of sufferers opt to self-treat rather than seek medical advice, substantial knowledge on headache prevalence, causation and burden is unknown globally. Mapping the entire population of headache sufferers can close this knowledge gap, leading to better headache management. The broad use of digital technology to gather real world data on headache triggers, burden and management strategies, in self-treated population will allow these sufferers to access appropriate support and medication, and therefore improve quality of life. CONCLUSION: These data can yield important insights into a substantial global healthcare issue and form the basis for improved patient awareness, professional education, clinical study design and drug development.

A Prospective Real-World Study Exploring Associations Between Passively Collected Tracker Data and Headache Burden Among Individuals with Tension-Type Headache and Migraine.

INTRODUCTION: Prevalence and burden of headache disorders in real-world settings is relatively unstudied. We explored the associations between passively collected activity data, headache burden, and quality of life in headache sufferers. METHODS: Data from wearable activity tracking devices and daily short questionnaires were collected over 12 weeks to assess occurrence of headache, activity, quality of life and self-rated health. Variables were analyzed using a series of mixed-effects models and stratified based on headache type. Multiple linear and logistic regressions were used to analyze treatment preferences. RESULTS: Behaviors inferred from activity tracker data suggested that individuals slept more, had reduced physical activity, and had lower maximum heart rate on days with headache. As headache-specific impact on quality of life increased, activity and maximum heart rate decreased and sleep increased. Headache days with higher self-rated health were associated with less napping, higher step count and maximum heart rate, correlating with increased activity. Migraineurs experienced greater burden in everyday life compared with tension-type headache sufferers. CONCLUSION: This study adds to existing evidence that activity trackers can be used to quantify headache burden in real-world settings and aid in understanding symptom management.