Veronica Day recalls that she began having severe headaches in her early teenage years. The fluorescent lights, constant stimulation, changing hormone levels, and the smells and noise associated with middle school all may have contributed to the frequent headaches.
“I would just put my head down on my desk,” Day said. Over the years, she would medicate herself with over-the-counter painkillers, but the headaches continued to increase in intensity and she’d frequently find herself at the emergency room. After a particularly severe headache led to another ER visit, she was finally referred to a neurologist.
“They started asking me really important questions,” she said, questions that previous doctors had not taken the time–or had known–to ask her. With her doctor’s prompting, Day began keeping a migraine journal, figuring out her triggers, and trying different medications.
“Once I finally had someone who was asking the right questions and helping me figure things out, getting me on migraine medication–it was like night and day,” she said. “I was so impressed at how the right medication could help me.”
Headaches and migraines are a top health priority for women
When results from Luna’s Women’s Health Study emerged, headaches and migraines were revealed to be a top five priority for participants.
The subsequent Migraines and Severe Headaches Study focuses on understanding the experiences participants have when dealing with migraines and severe headaches. By understanding people’s priorities and needs associated with managing migraines and headaches, Luna hopes the results will help inform the direction of research related to better treatments and outcomes.
“With the information from the Women’s Health Study, we created a community to gather more people–not just women–who had concerns about migraines and severe headaches,” says Dawn Barry, founder and president of Luna. “We partnered with QualityMetric, which had a validated instrument to gauge severity. It was a great opportunity to take what we found in one study and further expand our findings to gain more actionable insights.”
QualityMetric is a technology-enabled provider of patient health surveys. The Company uses a validated survey called the Headache Impact Test (HIT-6) that measures six items: pain, social functioning, role functioning, vitality, cognitive functioning, and psychological distress. This survey has been used to support the approval of new medications.
Day was encouraged by the study questions and agreed with the insights gleaned from the early results. “You’re asking the people who are suffering from migraines and headaches rather than just assuming what you think needs to be done,” she said. “By asking us ‘What’s your biggest complaint?’ or ‘What would you like to see happen?’ generates those open conversations.”
Insights from study hint at an unmet clinical need
More than three-quarters of study participants reported experiencing headaches at a level of uncontrolled chronic migraine. When it comes to treatment, a quarter said their headaches are still debilitating even after therapy.
Assuming that all members of this community are diagnosed with migraine and are being treated for their migraine headaches, the HIT-6 scores indicate that three-quarters of migraines sufferers (HIT-6 score of 60 and higher) in this community are not having their symptoms managed properly with their current treatment.
The impact of their migraine headaches are causing significant emotional burden, increased fatigue, disruption in cognitive functioning, and disability in performing daily role activities. “This would suggest that either individuals are not benefitting from their current migraine therapy and need a change in the approach to treating their migraine or these individuals are not adhering properly to their current therapy,” Mark Kosinski, chief commercial science officer at QualityMetric.
The study also shows that some individuals who report having headaches are likely having migraines. Preliminary results show the majority of community members are experiencing headaches at a level of uncontrolled chronic migraine.
“In other words, these individuals could benefit from a follow-up with a neurologist to determine if their headaches are more than the common headache and warrant a treatment approach consistent with chronic migraine,” he said.
Day can certainly relate, as it took years and a neurology visit to diagnose her migraines. After the diagnosis, figuring out triggers and treatment became so much easier.
“This is one of the values Luna brings to the table,” says Barry. “We have communities of people who want to contribute to research. And for this particular study, it’s incredibly easy for people to participate and they are able to see insights from people like them generated by their own participation.”
Developing a long-term strategy to manage headaches and migraines
Day said journaling and tracking her headaches was one of the smartest things she did for herself. This allowed her and her medical team to figure out the best medication and dosage. “Sometimes you have to be patient because it takes a while to get the right dosage. Once I got the right dosage for me, my quality of life went way up.”
She recommends journaling to find triggers, asking questions of your medical team, and lastly, being patient with yourself. “Don’t let stigma get in your way,” Day said. “Be patient with yourself.”
To learn more about conducting community-led research on the Luna platform, visit Communities or contact collaborations@lunadna.com.
About Luna
Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.
Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.
By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.