Improving Communication Between Patients With Migraine and Providers

Jessica Ailani, MD, the director of the MedStar Georgetown University Hospital Headache Center, in Washington, DC

Jessica Ailani, MD

In headache disorders, so much can vary from patient to patient, and while physicians treating the conditions know how debilitating they can be, patients often need to advocate for themselves. Although, in migraine, this does not always happen.

As a result, headache specialists such as Jessica Ailani, MD, director, MedStar Georgetown Headache Center, are encouraging their peers to improve upon the relationship building process with patients in order to improve the communication regarding symptoms of and experience with migraine. Additionally, with such a small number of headache specialists in the United States, this need expands to primary care as well.

To discuss the ways to improve this process and how primary care can get involved, Ailani sat with NeurologyLive^® at the American Headache Society’s 2018 Scottsdale Headache Symposium, in Arizona.

NeurologyLive^®: Do you think physicians and headache specialist are asking enough questions of their patients in the clinic?

Jessica Ailani, MD: It is a problem. The time aspect is really important. What happens in different types of headaches—patients with cluster headache, for example, learn to advocate for themselves very early on. They're dealing with this completely incapacitating, suicidal-type pain that comes in these brief little episodes, so nobody's saying that you're crazy. That doesn't usually attach to cluster, but with migraine, it tends to quickly to be pushed as “just a headache,” so these patients develop this stigma of “it's just a headache so it's not valuable to talk about it and there are so few options that if something is kind of working, I guess it's good enough.”

We'll hear this often when a patient says, “it's OK,” and you delve into it, they're like, “I didn't think there was anything else, I thought this was it.” There are so many ways of managing this that we're not always at the end of the line. There’re new things coming out, so we can layer options in. Sometimes we take “I'm fine” as “I'm fine,” but if you just ask that one more question of "OK, you're fine. But are you happy? Are you being impacted by being fine? Are you missing things? Are you not able to pick up your kids? Are you on the couch that day because it's working, but not quite well enough?” If you just ask that additional question, it's helpful.

The trouble with asking those additional questions is it takes time. We're pulling this out of the patient, they're not just volunteering that information. But if you build a culture of teaching your patients to advocate for themselves, that changes the dialogue very quickly. What I've noticed over time is that the more I've learned to ask these questions early in my relationship with these patients, when they're coming in for follow-ups they are advocating for better care. Having opened a dialogue about, “That's great you have new prevention options, I'm still not satisfied with my acute options, let's talk about how I can better manage the migraines when I have them.” That's very different than when I first started practice. They would just sit there like, “I'm OK, everything's great, everything's wonderful,” and you're trying to pull it from them.

There's a time forward aspect. I always say that 1 to 2 visits in, sometimes 6 to 8 visits in, you're doing the relationship building. You're getting them to trust that you are here to listen to them, and it takes that forward time. But, if your viewpoint is “this is a person who's going to be with me for decades,” 6 visits is nothing in the span of a lifetime of a patient. You build that early, they learn that they can talk to you openly, and they'll start coming in and the visits actually start to go really quick in the future because they know. They just tell you what's the problem right away, and you're going to work on trying to collectively fix that issue. There is some time cost in the beginning of the relationship, but you gain that time back in the long run, and it's important to try to remember to put that in when you can. You're not going to be able to do it for every patient, every single time. But try to manage that, with at least some of the patients each day, to further delve and try to pull more from them. Then it just becomes a habit that's very easy for you to do.

Is there anything that primary care could be doing to help in the care of these patients?

In medical school, most of us have barely an hour on the treatment of headache disorders as a whole. That hour lecture might include cluster, migraine, tension, maybe you'll get a little mention of post-traumatic headache, but there's not a lot of time to delve into these disease states. More and more, as we are putting emphasis on migraine and advocating for yourself as a patient, patients are coming in and talking about their headaches.

One piece of advice I have is if a patient—and they tend to throw it in at the very end of the list of things that are troubling them—mentions that they're having trouble with their headaches, encourage them to schedule a separate visit, and before the visit to keep a calendar and to mark down all their symptoms. Consider having simple screening tools in the office, something like ID Migraine. It's 3 questions that the medical assistant can ask the patient before you even enter the room, with a high probability that if the patient answers yes to 2 out of the 3 questions that this patient might have migraine. Then, again, if that's problem number 10 on a list, tell the patient that headaches are really important, and they might have a headache disorder that we can diagnose, and start them on treatment options, and improve the quality of their life. Make an appointment. A dedicated 15-minute slot where we can take the time to look at the frequency and see what they've tried before. Then, maybe try to align what they've tried and failed, and the type of symptoms they’re having with a better treatment regimen.

Trying to cram in headache disorders in 1 of 10 problems in 20 minutes—it's just not possible. But pushing to the patient that this is an important problem and it deserves its own appointment starts to again bring that advocacy out that this is important, and we need to talk about it. But you need the patient to pay attention to it, and you need some information them and need to bring it in before we have that appointment. That'll reduce that sense of, “How am I going to get this all in a short period of time.”

There are also numerous education activities going on to educate primary care about migraine, and I would just encourage primary care doctors to look at these local conferences that come to your city, your town, or something close by to you. Take a look. There's a chance there's going to be a lecture on migraine because as we're getting more and more information, and newer products that are coming out that are highlighting changes in how we believe different headache disorders are occurring in the brain, it's bringing more information back to the primary care. Attending an online seminar, going to one of these meetings locally can help. The more you go, the more you're hearing similar information, and you start to learn how to talk to your patient about this, and what are some options you have, building this toolbox for the patient to help them with migraine itself. There are 500 headache specialists, and most patients with migraine start and stay with their primary care doctor because they trust them, and they can do a really good job in improving the care of the patients.

Transcript edited for clarity.