Hello and thank you for joining this NeurologyLive® Peers & Perspectives presentation titled, “The Patient-Centered Visit & Shared Decision Making in the Management of Migraine.” I am Jill Dehlin, a registered nurse, certified health education specialist, patient advocate, and a person with migraine. I’m joined today by Dr Amaal J. Starling, a neurologist specializing in migraine from the Mayo Clinic in Phoenix, Arizona, to provide insight to incorporate patient-centered visits into a practice. Welcome, let’s begin. Dr Starling, how common is migraine?

 It is very common. Migraine affects 12% of the US population, so that’s approximately 40 million people in the US that have migraine. It’s more common in women, so it affects 1 in every 5 women. One in 11 children, and 1 in 16 men are affected by migraine. This is a highly prevalent genetic neurologic disease that is also highly disabling. In fact, it is the second most disabling condition worldwide, as indicated by the 2016 Global Burden of Disease Study. The disability is greatest from ages 15 to 49, which is also the time when people are the most productive. This is the time when migraine, unfortunately, is affecting productivity at home with family, at work, and within society. All of these things are disabled and impacted significantly with this highly prevalent, highly disabling disease of migraine.

 Given that migraine is highly prevalent and highly disabling, it’s an invisible disease. Let’s talk a little bit about the stigma of migraine and the effects of stigma related to migraine.

The stigma of migraine results in significant barriers. Now, based on epidemiology studies, there are a number of big barriers that scientists have been able to look at. These barriers include: talking to a doctor about their symptoms, getting the correct diagnosis of migraine, and getting standard of care. There are minimally appropriate treatment options for migraine. There was a recent epidemiology study published in 2019 that demonstrated that less than 12% of people with episodic migraine are actually traversing these 3 health care barriers. Less than 2% of people with chronic migraine which is defined as having 15 or more headache days per month, are traversing or crossing these 3 health care barriers.

Like you said, Jill, for a disease that is highly prevalent and that is so common, this is simply unacceptable. To break down these barriers, we have to talk about why they exist in the first place. So you talked about stigma. What is stigma and how does stigma play a role in these barriers? Stigma is a social construct that unfortunately devalues, delegitimizes, degrades, and discredits individuals with a specific condition. When someone has a specific disease or a condition that is stigmatized, it results in prejudice and discrimination, as well as a loss of status. Not only is this awful and just mean in and of itself, but it has significant effects and impacts on the health of that individual when they’re trying to access health care and when they’re trying to traverse those health care barriers. Migraine is a heavily stigmatized disease, and that is likely the root cause of many of the barriers that are resulting in the poor care for individuals with migraine.

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The Stigma Associated With Migraine 

 I, myself, have experienced stigma. I’ve self-stigmatized. I didn’t really advertise the fact that I have migraine disease until I became involved in advocacy. I learned about 5 years into my journey with chronic migraine that if I didn’t advocate for myself, then nobody else was going to do it. I’m a nurse; I’m not afraid of white coats, and I know how to talk to doctors. I know the health care profession, and the system so it was sort of a light bulb moment for me that if I, a nurse, couldn’t advocate for myself to get over this self-stigma, then other people probably were having trouble with that. Can you talk a little bit next about some examples of the advocacy that people can use as it pertains to health care providers? The self-advocacy, advocating for your patients, and the institutional advocacy that I know you are very good at doing.

 For sure. Jill, first of all, thank you for being the ultimate migraine warrior. When I talk to all of my patients, I make sure that they all are aware that by living every day with the disease of migraine, they are migraine warriors. And I let people know, who treat migraine disease, that coming in to work every day, going to CME (continuing medical education), and watching videos about migraine, are also migraine warriors because we are all fighting against the disease of migraine.

Self-stigma, as you’ve identified, is that stigma that is internalized. It is so impactful, a significant barrier, and results after years, decades, and really generations of stigma of migraine. It’s just a headache, right? I’m supposed to just get over it. People will feel it is embarrassing and a reflection of being weak, unreliable, and simply not a good person, or not a good mom, or not a good employee. It is strong! I relate to what you said about being a nurse and it being surprising that you also identified that you had this stigma. It is something that is so prevalent in people that have migraine, and it results in that number 1 barrier of people talking to a healthcare provider or a physician about their symptoms. If a patient feels any pushback, any minimization from their health care provider when they get the courage to talk about their symptoms, then they’re just going to crawl back into their personal pain and not bring it up ever again. That just puts up those barriers.

So, what is it that we can do as physicians and healthcare providers to overcome self-stigma? Well, number 1, if 1 in 5 women have migraine, we as physicians are meeting 1 in 5 women patients on a daily basis. We need to acknowledge the fact that we are likely under diagnosing migraine and need to proactively investigate to see if our patients have migraine. We should not only be asking about headache days but asking about how many headache-free days people are having to try to figure out how impactful these headache days and other migraine nonheadache symptoms are in individual lives, so that we can get better at the diagnosis and then also more aggressive treatment. 

The language that we also use in that appointment is also very helpful. Talking about migraine, not calling it migraine with an “s”, so not saying, you have migraines. You have 3 migraines per week. That would mean if you had 3 migraines per week, then the other 4 days you don’t have a migraine. But that’s not true. If migraine is a genetic disease, the DNA is in your body every day. It doesn’t jump in and out of your body 3 days out of the week It’s there every single day, just like asthma. We don’t tell people with asthma; they have three asthmas a week. Say that the patient says he/she has 3 asthma attacks a week. Similarly, for people who have migraine, they have migraine disease every single day of their life. They may have three migraine attacks per week, or they may have five migraine attacks per month, but they have the disease of migraine every day. 

I have found that when I started using that language, not only was it helpful to legitimize the disease of migraine and validate to the patient that they have a disease. This is something that is very impactful in their life because they’ve always thought, yeah, I have headaches, but it really shouldn’t be that bad, this can’t just be migraine. There has to be something else. It has to be a tumor; it has to be MS (multiple sclerosis). No, you have migraine. It’s a genetic disease. It is highly disabling but we can treat it. And they’re like, oh, OK, I have a disease. We can treat it. I have a disease. That’s why I feel so bad, but great news, we can treat it.

The other thing that I didn’t realize when I started using this language that was really helpful was that, initially, when people thought, “I have migraine” 1 day and “I don’t have migraine” the next couple days, they thought, “Why do you want me, Dr Starling, to take a preventive medication on a daily basis when I don’t have a migraine on a daily basis?”. Teaching people that they have migraine disease every day helped me teach them that it’s important to maintain their disease with a daily preventive medication. This is similar to what is done with asthma, where some people will need a maintenance medication on a daily basis and then a rescue inhaler. 

Similarly in migraine, we need a preventive medication on a daily basis and then a rescue medication for when they have an attack. Not only was using that language helpful to legitimize and validate, but it actually helped in getting buy-in in the treatment that I was recommending. It was empowering for the patient to know the specific language to use for themselves when they’re using it with their family, and their employers, and their friends.

Destigmatizing Migraine: Forms of Advocacy  

It seems like saying, “I’m having a migraine headache” is a lot less powerful than saying, “I’m having a migraine attack.” A migraine attack, an asthma attack, a heart attack, a brain attack—those are all powerful words. I think engaging the use of empowering language in the office is a smart way to go because you’re modeling empowering language for your patients. I think it’s important that we, as people with migraine, learn how to use those words so other people can respect our challenges and the difficulties. Thank you for that.

 Yes, of course. Jill, you bring up such an important point that I want to highlight. As physicians and health care providers, it’s so important to use migraine attack and eliminate the word headache because a migraine attack involves so much more than a headache and can be very disabling for patients. In a migraine attack, about 30% to 40% of patients will have an aura phase where they’ll have visual symptoms, sensory symptoms, they can have speech symptoms. Some people can even have motor symptoms that can be very disabling. This happens before the head pain or the headache phase starts. So, in a migraine attack, you can go completely blind or have a distortion of your vision without the head pain component. Obviously, that migraine attack has impaired your function and your ability to work or be able to take care of your children.

Then you’ve got the pain phase, which the majority of people will have a moderate to severe level of pain. Some people may have a mild to moderate level of pain, or rarely, some people will have no pain but be sensitive to light, sound, and motion. They’ll have a lot of nausea and vomiting. After the pain phase is the prodrome phase, often called the migraine hangover phase, where you are fatigued and have a lot of neck pain, soreness, and cognitive symptoms. Again, it’s not just about head pain, and that’s why using the phrase “migraine attack” and “migraine symptoms” encompasses the entirety of migraine attack rather than just focusing on that 1 phase of the migraine attack that involves head pain.

In addition, headache, as we all know, has such a negative connotation in the English language. Headache is synonymous with something that’s just a pain in the butt, right? It’s something that’s negative, and so I try to do my best to try to eliminate the word headache. I think another example that we physicians have used for years, and the majority of my colleagues still use, and I probably still use but I’m trying to make an active change, is when individuals have tried medications and have found them ineffective, what do we say? We always say the patient has “failed the medication.” Jill, you have failed this medication, you did not do a good job, you got an F. What do you mean? How are we putting the guilt on the patient? You did not fail the medication. The medication, if anything, failed you. But honestly, it’s not the medication’s fault, it’s not your fault, it is that the medication was ineffective or poorly tolerated. 

I like to take all the blame out of it, and I like to say, “This treatment option, this medication, this device, was ineffective or poorly tolerated.” I do not like that the patient failed the medication or even that the medication failed. But it’s something that we have always used. It’s even in the insurance language. It’s what we use in our talks. It’s what is used in clinical trials. It’s institutional stigma. It’s in the language of all of these things, but it is stigmatizing language. It blames the patient.

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Strategies to Empower Patients With Migraine 

 Dr Starling, you were talking a bit about all the different phases of migraine, and for many of us, the pain scales aren’t really appropriate. Now that I’m on a CGRP monoclonal antibody, I may have a low level of pain but a high level of disability because of the cognitive problems, the word finding issues, the inability to do simple math, or the executive functions that fly out the window. I think it’s really important that health care providers understand that a migraine attack is a certain phase, but there are other phases that can go along with that, which may be just as debilitating as the headache phase.

 You’re exactly right. During these appointments with patients, the first thing I say when I’m talking about the diagnosis is,” You have the diagnosis of migraine. Migraine is a genetic neurologic disease.” The next thing I say is that “The word migraine is not synonymous with headache. Migraine is a lot more than just a headache,” and I go through the spiel that you mentioned. What we focus on in that initial appointment and definitely in follow-up appointments is function. We all talk about headache diaries, right? We all want patients to keep these diaries because it helps us determine care.

Now, as physicians and health care providers, if we’re going to ask our patients to keep a diary of their symptoms, we must look at it on the follow-up visit. If we don’t, that’s just mean and inappropriate. If you ask a patient to keep a log of their symptoms, please look at it in that follow-up visit. It is really important to look at it because it can help us make treatment recommendations. But how do I ask people to keep their symptom diary?

I don’t do it based on a pain scale like you’ve mentioned. I do it based on function. I like the stoplight diary—green, yellow, red. Green is a day that individuals are able to function. Yellow is a day where their function is impaired but they’re still able to get what they need to do done. Red is a day where they’re disabled, they’re in bed, they’ve had to call out sick from work, they’ve had to call in family to help with their kids, and they’re completely out of commission on that day. I always tell my patient population that our goal is for the green revolution. We’re always looking for as many green days as possible. I flip through that symptom diary and look for a progression toward those green days.

I would recommend that we always ask for people to keep a symptom diary rather than a headache diary because it’s about function, not solely about head pain. Also, first and foremost, if you ask people to keep a diary of symptoms, please look at it. When you do look at it, if you see that symptoms are spread out randomly throughout the month, focus on prevention. But if you see that they’re clustered in a week or two, that’s when you focus on the breakthrough pain. It can be really helpful for how we address our treatment recommendations next.

Migraine Management: Significance of Patient Diaries 

Dr Starling, would you agree that an educated patient who participates in shared decision-making with their health care provider usually has better outcomes?

Yes, 100%. In this day and age of Dr Google, I have a lot of patients who come to me and they say, “I googled this. I’m so sorry. I know I’m not supposed to Google, but I did,” and then they ask their question. I always reassure people that I want you to be informed, to investigate and look up your own information, but I also want to provide people with appropriate places to find information. 

In fact, at every initial visit I have with patients and at every follow-up visit, not only do I recommend nonpharmacologic treatment, preventive treatment, and acute treatment, but I also recommend therapeutic education or therapeutic advocacy. If you have education, advocacy, and empowerment about your disease, you will have better outcomes. This has been demonstrated in chronic disease studies. For example, in diabetes studies, this results in better outcomes, lower hospitalizations, shorter hospitalization, fewer amputations, and things like that. A similar study needs to be done in migraine so we can demonstrate that, but we would suspect that since migraine is a chronic disease, the same thing would apply. 

I always provide patients with appropriate resources and organizations that they can join and obtain information. They can become educated about the disease of migraine and what the upcoming novel treatment options are, so that they have hope. If we can get the majority of people with migraine into a health care provider, get them the right diagnosis and appropriate treatment options, we can help treat the majority of people with migraine.

But there is a minority of individuals with migraine who are still struggling, even with all the treatment options we have available. For those people who have tried many of the treatment options we have available, they need to be involved in education and advocacy so they can see what is coming down the pipeline to have that hope for future treatment options. Plus, when you’re involved in advocacy, it can be therapeutic, help with your recovery, and help you have more self-efficacy, so you feel more in control of your disease.

Migraine: Patient Education and Quality of Life  

As you know, I’m quite active nationally as a migraine advocate, and there have been some pretty low times in my life. Honestly, it’s the group that keeps me going. If I didn’t have my migraine advocacy community, it would be a really lonely journey. Groups that work on advocacy include the American Migraine Foundation, the National Headache Foundation, the Alliance for Headache Disorders Advocacy, and their Headache on the Hill initiative, and Miles for Migraine, which has races, or walks, or relax events for people. People with migraine can interact and be with the people who get us, they understand us. 

I can’t tell you how much it has meant to me as a person with migraine to have other people in my life who understand the journey we’re going through, the struggle, and the disability. We boost each other up and give each other suggestions. But I’ve also had to be very careful in the way that I suggest resources to people because if you go to somebody’s blog, you’re not always guaranteed that that information is going to be accurate. What kind of resources, do you have specific ones that you like to recommend?

Yes. I think a lot of the ones you named are great. Besides the American Migraine Foundation and Miles for Migraine, the other one I often will recommend is the Migraine World Summit. The Migraine World Summit has annual educational videos from experts around the world regarding migraine and other headache diseases. In addition, they’ve been able to create something called the Migraine Masterclass.

The Migraine Masterclass has videos and blogs that people can read, and questions they can be quizzed on that can be very helpful. The Society for Women’s Health Research also has a migraine tool kit that’s really helpful. Of course, the American Migraine Foundation is producing content on a weekly basis, especially content coming directly from the American Headache Society, its sister organization. That’s always nicely up to date. Participating in Headache on the Hill is a beautiful event that’s with physicians, health care providers, and patients, bringing people together. 

I think you bring up a great point, Jill, about how much advocacy does for the patient. Since this program is for physicians and health care providers, I also want to emphasize how much participating in advocacy can do, not only for the physician-patient relationship but also for physicians themselves. For me, participating in advocacy at the bedside, at the level of the institution, and at the level of legislative advocacy, has really been my antidote for burnout. 

When I’m at the bedside with patients, and I’m providing patient awareness and education such as providing them with resources, that’s helping me care for this patient with chronic disease. But then as an individual, just like you said Jill, I am getting involved in the migraine community. I’m participating in things like Miles for Migraine, Headache on the Hill, and things like Shades for Migraine which is as simple as putting on some sunglasses in June, taking a picture, and posting it on social media. Becoming a part of a community, becoming visible and making the invisible disease of migraine visible, has been such an important part of my antidote for burnout. I feel connected to other headache specialists, other neurologists, and to my patients, at a level that I didn’t before I became involved in advocacy.

Institutionally, I’ve enjoyed taking headache medicine to that next level by making headache medicine and migraine as visible as I can. Every opportunity that I have to mentor, teach, lecture, and talk to media, I do. I never decline an opportunity to speak about the disease of migraine and other headache disorders. I just gave a talk on migraine and other headache disease pharmacology at the medical school at the Mayo Clinic. From just a 2-hour lecture, I have 3 individuals out of a class of 50 who are now interested in the practice of headache medicine.

They are all participating in research and writing projects with me. If all of us participate in this, we will have a plethora of headache specialists to meet the needs of the 40 million people with migraine, and at that level, we’ll be able to break down these barriers.

The Patient-Centered Visit & Shared Decision Making in the Management of Migraine

The Stigma Associated With Migraine

Destigmatizing Migraine: Forms of Advocacy

Strategies to Empower Patients With Migraine

Migraine Management: Significance of Patient Diaries

Migraine: Patient Education and Quality of Life

Migraine Advocacy: Resources to Support Patients