In 2006, the World Headache Alliance described migraines as a “forgotten epidemic;” More than a decade later, migraines remain a high unmet need globally and have grown to be the leading cause of disability for those under the age of 50, according to the Global Burden of Diseases, Injuries, and Risk Factors (GBD). Since migraines are still profoundly undertreated and underdiagnosed in 2019, the total magnitude of the quality of life impact is difficult to discern.
What is clear is that individuals worldwide are silently suffering. For the most part, they are not showing up in emergency rooms or doctor’s offices, going unnoticed by payers. Millions are living with extremely incapacitating symptoms that limit their physical function, mental wellbeing, and ability to go to work and school.
Multiple therapeutic developments over the last year promise relief for these silent sufferers. The FDA approved a brand new class of anti-CGRP migraine treatments that act on a specific neuropeptide involved in a migraine headache attack. A non-invasive, hand-held medical device that alleviates pain by stimulating the vagus nerve was also cleared. Though access and effectiveness of these recent migraine advancements remain to be seen, there is no doubt that biopharma — Lilly, Teva, and Amgen amongst others — are making significant investments in treatments.
In a matter of hours, we configured and deployed a mobile survey designed to better understand a breadth of questions: medication usage, barriers to care, methods for tracking symptoms, prioritized services to reduce migraine burdens and more. Since respondents came from our Achievement population, we directly consented participants for this particular research project and gathered passive, continuous behavior and health data from smartphones, wearables, and other connected sensors, enriched it with patient reported information, and further labeled it with a validated, commonly-used instrument to assess migraine disability: the Migraine Disability Assessment (MIDAS).
Unparalleled speed and depth of behavioral insights
Seventy two hours later, we had results from 4,121 individuals with migraines, both episodic and chronic sufferers, with a full range of disability as measured by MIDAS. We found that our sample was comparable to two large observational studies of migraines, the American Migraine Prevalence and Prevention study (AMPP) and the Chronic Migraine Epidemiology and Outcomes (CaMEO) study. Our sample had higher rates of severe disability as compared to prior studies but similar demographics.
72 hours later, we had results from 4,121 individuals with migraines
Everyday behavior data
As part of the initial survey, participants provided consent for us to analyze 90 days of their historic activity data (lining up with their MIDAS ePRO) to better characterize their physical function and sleep.
We quickly saw that individuals with a higher frequency of migraine headache attacks (chronic type) are less physically active than their counterparts with a lower frequency (episodic type). When looking at overall disability, those who had a MIDAS grade of severe disability have higher variability in nightly sleep hours than those with little or no disability. While these are simple analyses utilizing only two sensor features, fully aggregated to 90 days, they are still able to show how we can objectively measure the impact of migraines on everyday life.
Breaking down patient engagement by migraine type
To better understand patient engagement strategies, we asked individuals about their barriers for reducing migraine frequency and what services they felt would be most important to help them reduce their migraine burden.
More than one-third of individuals with chronic migraines stated that their current treatment regimen does not relieve their migraines, a clear indication of the significant unmet medical need. Across the board, individuals are seeking services that can help them better manage their migraines. With financial assistance ranking first, it’s not surprising to see Lilly offer patients their drug without charge for the first year. Behind the costs, individuals told us that personalized reports and insights were the most important services to help reduce their migraine burden. Fifty seven percent (57%) of individuals with migraines (both types) cited reports for helping understand their own behaviors and environment affect their migraines and 54% cited them for understanding whether their migraines were getting better or worse.
37% of individuals with chronic migraines cited that their current treatment regimen does not relieve their migraines
Given individuals’ desire to better understand their own migraines, we thought more individuals would be using a systematic method of tracking their migraine symptoms, treatments, and experiences. It wasn’t true. Almost 60% of migraineurs are not currently tracking, leaving a significant opportunity in the market. The most popular method of tracking remains pen and paper; in addition, more individuals cited using their wearable device to track migraines over a dedicated smartphone app. In the other category, some told us they track migraines directly on their digital calendar (e.g., Google Calendar).
Current medication usage by migraine type
Our survey also captured medication use across the migraine types, indicating a minority are not using any medications to treat their migraines. It’s obvious that the anti-CGRP class is off to a strong start, with 4% of those with chronic migraines already using these brand new treatments alongside 0.4% of those with episodic migraines.
Background and survey overview
All respondents were recruited through Evidation’s consumer channel, Achievement. The questionnaire was open to individuals with a self-reported medical diagnosis of migraine. The questionnaire was available for ~72 hours beginning on October 18, 2018 and closed on October 21, 2018. Some individuals reporting their race and sex prefer not to answer and are excluded from the demographic ratios.
To get in touch with our team about this case study or potential collaboration, don’t hesitate to reach out.