A social media survey looks at the telemedicine experience of migraine and headache patients during the COVID-19 pandemic

In early 2020, Dr. Rashmi Halker Singh, a headache specialist at Mayo Clinic in Scottsdale, Arizona attended a department meeting to gauge interest in using telemedicine. Most people were hesitant.

And then March 2020 happened.

“We had no choice, and we had to jump in and just go for it,” says Dr. Halker Singh. “And all of a sudden it was like, ‘Oh my gosh, this is fantastic. We can see patients, we can improve access. We can do so much and be available for our patients.’”

Across the country, patients and doctors used telemedicine in a way they never had before. Thanks to loosened restrictions and increased insurance coverage, this presented a unique opportunity to assess this newer option. The American Migraine Foundation developed a survey to understand how migraine and headache patients used telemedicine during the COVID-19 pandemic. This survey was sent to more than 100,000 members of our community through social media and email, and the results were recently published in Headache: The Journal of Head and Face Pain.

“We had a unique opportunity to ask our community about their experience using telemedicine for headache and migraine care,” says Nim Lalvani, MPH, and Executive Director of the American Migraine Foundation. “We’re hoping the positive results of this first-of-its-kind study will help the community advocate for the expanded access to telemedicine even once the pandemic ends.”

Telemedicine can help remove some barriers to getting care. The survey found that almost 90% of respondents would continue to use telemedicine. “That 89% of respondents in this study indicate that they want telemedicine as an option in the future speaks to the unmet need that currently exists—a need that this technology can address,” says Dr. Lawrence Newman, Chair of AMF and Professor of Neurology at NYU Langone Health.

We talked to two of the study’s authors, Dr. Halker Singh and Dr. Chia-Chun Chiang, assistant professor of neurology and headache specialist at Mayo Clinic in Rochester, Minnesota, about the findings and implications for headache and migraine care.

What did the study show?

More than 1,100 people responded to the survey. The vast majority of those (93.8%) had a headache diagnosis before using telemedicine. More than half of respondents (57.5%) said they used telemedicine during the study period: March 2020 to September 2020. Of those who used telemedicine, 85.5% said they used it for follow-ups while 14.5% used it for new patient visits.

Dr. Halker Singh says she experienced the benefits of using telemedicine for follow-up visits in her practice. Telemedicine allows her to more quickly accommodate patients for follow-up visits, sometimes within hours of requesting the appointment. This would not have been possible if they had to physically travel to see her. “My patients tell me all the time, that it’s been incredibly convenient, that they don’t have to take so much time out of their schedule to travel to come and see me, especially if it’s for a short follow-up appointment,” she says.

The type of provider seen for telemedicine visits was split between headache specialists (43.7%), general neurologists (34.4%), primary care providers (30.7%), headache nurse practitioners (11.3%), and headache nurses (3.2%). “Different levels of healthcare providers were all involved in telemedicine to help manage patients’ headaches,” Dr. Chiang says. “I was pretty impressed to see that.”

While only 7.4% of patients received a new headache diagnosis from telemedicine evaluation,52.3% of patients were prescribed a new medication, and likely more patients have a change in their treatment plan beyond being prescribed a new medication. “That really emphasizes that telemedicine provides patients with opportunities to gain better control of their headache disorder while not having to commit to the time to travel and the risk of exposure to COVID-19,” Dr. Chiang says.

More than 80% of patients (82.8%) rated their telemedicine headache care experience as “very good” or “good,” and almost 90% said they would prefer to continue using telemedicine for their headache care.

What are the benefits and challenges of telemedicine for migraine and headache care?

Overall, the benefits of telemedicine over traditional in-office visits include increased convenience and decreased barriers. But telemedicine might be especially useful for headache and migraine care. “I think a unique thing for headache medicine is that a majority of the diagnoses rely on the description of the headache,” Dr. Chiang says. “So that makes telemedicine a perfect thing specifically for headache medicine.”

Dr. Halker Singh says that sometimes her migraine patients miss appointments because they are having a migraine attack and can’t leave their homes. With telemedicine, they don’t have to travel to see her.

Not having to travel also means patients from other areas of the country can access specialists. “I have actually been able to easily see patients from all over the country who I would not have been able to see otherwise because they’re free at home and able to see me now from New York or wherever, without having to get on an airplane and fly across the country to make that appointment,” Dr. Halker Singh says.

Both Dr. Halker-Singh and Dr. Chiang are also aware of the shortcomings of telemedicine. Telemedicine is only accessible to people with access to the internet or a cellular plan with data. The study also reflected that. The survey went out to people who were active members of the American Migraine Foundation and was sent out electronically. “If patients don’t have internet access or if patients don’t use the internet, then they don’t have the opportunity to tell us whether they like telemedicine or not,” says Dr. Chiang.

What’s the future of telemedicine?

The positive reviews of telemedicine in the study are encouraging for Dr. Halker Singh, who would like to see telemedicine access increase. “We know that migraine really affects everyone, she says. “It’s a very prevalent disease with a significant disease burden and, to really improve this and improve telemedicine, we need better access.”

One of the results from the study that Dr. Chiang found impressive was the mix of providers using telemedicine. “That also indicates that if insurance coverage for telemedicine were to be rolled back then not only patients but multiple levels of healthcare providers would be affected,” she says.

During the pandemic, insurance providers allow for the increased reimbursement for telemedicine visits, and Dr. Halker Singh would like to see that continue. “Our hope is that telemedicine will be something we can continue to provide once the pandemic ends and hopefully insurance will allow for the continuation of this,” she says.

The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.