The associate professor and director of the Headache Medicine Fellowship Program at Thomas Jefferson University discussed treatment optimization for patients with migraine and raising overall awareness for preventive treatments.
Two separate analysis from the Chronic Migraine Epidemiology and Outcomes (CaMEO) study were presented at the 2021 American Academy of Neurology (AAN) Annual Meeting, April 17-22. The first, showed that poor treatment optimization was associated with greater lost productive time (LPT), suggesting that increased optimization may also be associated with indirect cost savings.1 The second demonstrated that among people with migraine potentially eligible for prevention, less than 10% were currently using a migraine preventive and an additional 10% had discontinued prevention.2
Led by Stephanie J. Nahas, MD, the overarching theme between both studies characterizes treatment gaps within the migraine community, and calls to question whether the awareness for those eligible to preventive treatment options, is fully there. Nahas, an associate professor and director of the Headache Medicine Fellowship Program at Thomas Jefferson University, claims there is a lot of stigma associated with the disease, which may deter patients from seeking the care they might need.
As part of a new segment of NeuroVoices, Nahas shared her thoughts on the reasons for low preventive treatment use, the overall awareness of migraine among clinicians and individuals, and why treatment optimization is crucial to a patient’s success.
Stephanie J. Nahas, MD: When it comes to acute treatment, it seems like a logical conclusion is that if you have an acute treatment that doesn’t always work for you, you’re going to be disabled by migraine attacks from time to time. If you’re somebody who’s got a job, that means that might interfere with your work. Perhaps the finding itself is not that surprising. What’s surprising is the magnitude of the effect. How often does this interfere, and how can we highlight the reality of this situation?
Why does this happen? There are a number of reasons. Acute treatments come in many varieties, and there can be confusion on the part of patients and providers as to what is the best to recommend for that patient. We could even take a step back and say that around half of people with migraine aren’t even diagnosed yet. They have no clue what they have. They’re definitely not going to get a prescription, but instead relying on something they can get without a prescription, something over the counter or off the shelf. For some people, that’s fine. But for other people with migraine, it’s not enough.
When you graduate into formalized medical care and start getting prescription acute medication drugs, patients may try several things and then become frustrated when they don’t get the results they’re looking for. Or there may be side effects that are intolerable, which might turn them off to that family of medications forever. The costs also might get in the way as well. There are a number of reasons that patients don’t get adequate advice, diagnosis, and recommendations for treatments and how to use those treatments properly.
We always say to treat at the onset of the attack. But if somebody knows that their medication will give them relief, but may them a little sleepy, they may be reluctant to take it while they’re at work, especially if they have to be alert while they’re at work. Therefore, they wait as long as possible until they get home and take their medication, but by then the horses out the gate and they may still be dealing with the migraine symptoms the next day from an inadequately treated attack. While they made it through day 1, they’re out of commission for day 2.
Some of the barriers to achieving optimal migraine treatment results start with the diagnosis and the fact that a lot of people remain undiagnosed. Even those who are diagnosed, clinicians too often will lose focus on the impact of the disease. When the disease becomes burdensome enough, that’s what dictates the decision to offer or recommend preventive treatment. For every person, that’s different. That may revolve around the total number of days with headache or migraine symptoms, or around the intensity of those attacks, or may revolve around what that person has to do with the rest of the time in their life. Those people can’t afford to have even 1 or 2 attacks per month which might affect their function.
We say in general, anywhere between 2 and 6 migraine days per month, with an added valence of how disabled they are from their attacks, helps to determine whether somebody should be offered preventive treatment. That’s a lot for somebody who doesn’t do that every day, and it can be time consuming to ascertain all that. Unfortunately, there may not be enough time within a visit to go into that level of detail. Additionally, sometimes patients are reluctant to discuss in detail how much their migraine is affecting them. They feel like they have migraine because they did something wrong, they put a lot of blame on themselves, and there’s a lot of stigma associated with migraine. People may not want to admit they need more help, and they may not want to take medication. A lot of people just don’t want to admit when they’re ill.
Migraine affects a lot of young people who don’t have any other medical problems. If not for migraine, they wouldn’t need medication ever. They don’t want to feel like a little old lady for a lack of a better word, having to take several pills every day to treat this disease. Most of society sees it as a nuisance and even something that’s the fault of the person who has it. There’s a lot that goes on with the thinking and conceptualization on both the patient and provider side. That’s the foundation that we’re left with.
What was so surprising about the survey data, keep in mind this was from several years ago not in the modern era where we have more treatments, is that when you ascertain based on the degree of disability and disease burden and look at who should have been considered for preventive treatment versus who was actually on it, the rate was astonishingly low. It was something like about 10% of people who should have been on it, were on it. Now, some of those had been on preventive treatment before and gave it up for whatever reason. Those reasons, again, can revolve around side effects, costs, or lack of effect. For some of them, they got better and thought they were better enough, so they got off medication, but it turned out they still needed it. Even if they’re better than they were before, they’re not optimized. You’ve got to put some on the clinician as well, to be constantly monitoring this and having open and honest discussions, frank discussions with patients about this disease and what it entails.
It absolutely is. A large part of that is the stigma of the disease, where we tend to minimize and think that it’s not so real. There’s a lot of psychological and behavioral stuff, which is true, but it’s also a real biologic disease that is nobody’s fault. I find myself falling into this trap, too. I try to catch myself and I’m ashamed of myself every time it happens, but it’s natural human instincts. You see someone who is doing not as well as you hope they would, and they admit they’re not sticking to their sleep schedule, not exercising as much, and of course you’re going to say, ‘well, why are you complaining to me, when you haven’t followed my advice? No wonder you’re not doing well.’
You can’t take it like that. You have to play the hand you’re dealt and work with the tools you have. You have to work with the person that’s sitting before you and find a workable solution. It’s not realistic to tell and expect every patient to follow every single 1 of your directives down the line. It’s just human nature, it’s not sustainable for everybody. That’s why every care plan must be carefully crafted, individualized, constantly evaluated and reevaluated, and then tweaked for optimal response. I like to say that every case of migraine is like a snowflake. They all have things that are in common, but no 2 cases of migraine are identical. They’re all beautiful in their own weird way.
Transcript edited for clarity.