How I Treat: Tardive Dyskinesia
An expert discusses how an integrated, disease-based care model enables more accurate diagnosis and personalized treatment of tardive dyskinesia through coordinated neurologic and psychiatric support.
Hubert Fernandez, MD: I am Dr Hubert Fernandez. I am a neurologist and I specialize in movement disorders. I direct the Center for Neurological Restoration at the Cleveland Clinic Neurological Institute in Cleveland, Ohio.
How do you ensure a patient-centric approach in the treatment of tardive dyskinesia (TD)? Are there particular strategies or models you’ve implemented to promote individualized care that addresses both motor and non-motor symptoms?
Dr Fernandez: That’s a great question. We do pride ourselves with providing an integrated, multidisciplinary, patient-centered approach at the Cleveland Clinic. We do this for not just tardive dyskinesia, but for any disorder. We call it patient-centered and interdisciplinary because our administrative, fiscal, and geographical units or structures are arranged in disease-based centers at the Neurological Institute.
The traditional academic structure would be, there is a department of neurology, a department of psychiatry, and a department of neurosurgery, for example. While there are diseases where they huddle together during the day, at the end of the day, they all go to their different floors and their different departments. Decisions regarding expansion of care or research are discussed at the department levels. They don't always speak the same language because they're different departments.
At the clinic, we have disease-based centers, so every discipline that cares for a specific disorder are all together. They're in one unit; they're not in separate departments. Tardive dyskinesia is one of them.
For example, tardive dyskinesia requires a neurologist to give the diagnosis and to provide pharmacological treatment. There are a lot of behavioral issues in tardive dyskinesia. In fact, most of them have a psychiatric or behavioral problem, that's why they were placed on the medication that caused tardive dyskinesia. A psychiatrist and a psychologist would be important in the coordinated treatment of a patient with tardive dyskinesia. Every now and again, when the tardive dyskinesia is severe and resistant to medications, they can be candidates for deep brain stimulation surgery. That's where a functional neurosurgeon comes in.
At the Cleveland Clinic, the neurosurgeon, the neurologist, the psychiatrist, and the clinical psychologist are all under 1 center even if their disciplines point them to different departments. That's one thing we do. In our interdisciplinary clinics, all of these clinicians from different disciplines come together in the same setup so that we can provide patient-centered care.
Have you incorporated any technology-enabled tools or digital platforms to aid in the monitoring or management of TD symptoms? If so, how have these tools improved treatment adherence or symptom tracking?
Dr Fernandez: Not in the way we do for Parkinson disease and for Huntington disease, for example. These disorders—Parkinson disease and Huntington disease—are progressive disorders. They're neurodegenerative and their presentations are fairly uniform.
In tardive dyskinesia, there is a very broad spectrum of clinical presentation. Some twitch, some are twisted, some are shaky. They come in different shapes and sizes. Some involve the mouth, the tongue, the lips, and face, others involve the neck predominantly. Others involve the back; others involve the legs and the arms. So, it's harder to create a technological app, for example, that would capture all of them, score them individually, and track them over time.
However, we do use the same electronic medical record system that is far more advanced than any that I know of, at least in this country, where we are able to track clinical data, medications, and outcomes so that we can see how they do over time. We not only learn from their individual outcomes, but we learn from their cumulative group outcomes so that we can predict who is faring better and who is not doing so well. We can identify these patients, what is common amongst them, and things like that.
We use technology in that way when we use big data to predict the types of patients who will do well and who will not do so well in that case.
Can you walk us through your typical treatment protocol for tardive dyskinesia? What pharmacologic and non-pharmacologic interventions do you find most effective, and how do you tailor these approaches based on patient characteristics?
Dr Fernandez: When a patient is referred to us with possible tardive dyskinesia, the first order of business for us in the care of that patient is to make sure it really is tardive dyskinesia. There are many disorders that can mimic tardive dyskinesia. It can be tricky. There are neurodegenerative disorders, like Huntington disease, Parkinson disease, or other conditions, that have inherent behavioral problems for which they are prescribed these medications that can cause tardive dyskinesia.
When they develop abnormal involuntary movements, a primary care physician (PCP) or a psychiatrist may label them as having tardive dyskinesia. In reality, it could be masked by an underlying neurodegenerative disorder or other symptomatic disorders that can look like it. Strokes, brain tumors, and infections that affect certain areas of the brain that cause abnormal involuntary movement, for example, can look like tardive dyskinesia. So, the first order of business is to ensure that the diagnosis is correct.
Let's just say it is looking like it is tardive dyskinesia. The second order of business is to look at the offending agent. What medication caused the tardive dyskinesia for this patient? If that medication is still being taken, then it should be replaced or, at the very least, minimized—because the best treatment for tardive dyskinesia is probably to remove the offending agent: the drug that caused the disorder in the first place.
That's in the ideal world. In some cases, the patient is stuck with that medication because, without that medication, they would be depressed, they would have psychosis, or they would be anxious. They've tried every other medication, and this is the medication that makes them emotionally stable. In that case, you have to keep the medication that caused tardive dyskinesia and relieve those symptoms in a different way. That's when we use medications, whether approved or not officially approved, for tardive dyskinesia.
Thankfully, nowadays we have 2 US Food and Drug Administration (FDA)-approved medications for tardive dyskinesia that we can prescribe. Before that there were none—up until the emergence of these 2 medications—and we were left using off-label medications, meaning medications that are approved for other conditions but prescribed for patients in an off-label use. That's our 3-step procedure.
The fourth step is that there are some forms of tardive dyskinesia that become so severe, bothersome, and resistant to the medication that they can be considered for deep brain stimulation surgery or other functional neurosurgical procedures.
What metrics or patient-reported outcomes do you use to assess the effectiveness of your TD treatment strategy? How do you monitor progress, adjust interventions, and ensure continued quality of life for your patients?
Dr Fernandez: That's a really important question. The easiest way to evaluate a patient, whether they're responding to medications or not, is to simply ask the question, "How are you doing?" Sometimes that's a loaded question, but it gets to the heart of the matter. They could say, "Physically, I'm doing okay, but I can't tolerate your medication. It's making me nauseated. It's making me sleepy. I can't think." But an outcome measure that calculates the degree or the severity of abnormal involuntary movements might lead you to think that you have a successful treatment. Subjectively, if you ask the question to the patient, it may work, but there are far bigger side effects that negate any benefit from that medication.
On the other hand, you'll have a patient who says, “My symptoms, physically, are okay. They're a little bit better. But you know what? I'm calmer. I like the effect of this medication. It blends well with my antidepressant and my other medications. Thank you for that." Again, you could be misled by an outcome measure that simply rates the severity of motor improvement and would give you a false negative that indicates that it doesn't really work as well, but patients are really satisfied.
The other question is how many of them are still on the medication? If they don't really like it, it does more harm than good, they're not going to stay on the same medication anymore. So simply ask them, "Are you still taking the medication?" They'll tell you, "Yes, in fact, can we increase the dose to see if I could do even better?" or "No, I gave it a good 2 weeks, but I really can't tolerate it. I'm sorry, I'm not on it anymore."
There are subjective and objective measures that tell us whether the treatment approach that we've employed for that particular patient helps them or not.
Can you share how you address safety and quality concerns when managing TD in patients who are often frail, cognitively impaired, or on complex medication regimens?
Dr Fernandez: That's the art and the science of medicine. The science of medicine tells you that there is a medication that caused hypersensitivity to dopamine receptors that consequently resulted in abnormal involuntary movements. Science would tell you that you have to withdraw that medication immediately, if possible, and replace it with a nonharming medication.
However, the art of medicine will tell you that you can't do that quickly. They've become dependent on that medication for years. It's only in the last few months that they experienced this side effect. You have to win them first [and show them] that you know your diagnosis is correct and you're confident with your diagnosis. You have to explain what the disorder is, and you have to explain to them that the approach requires some investment on their part.
What do I mean by that? Sometimes when you withdraw a patient from the offending agent, their tardive dyskinesia symptoms, their abnormal, involuntary movements, worsen before they get better. Without explaining the natural course when you withdraw someone from it, you would have people quitting and not being with you for the long haul in that treatment approach. That is the more ideal treatment approach, but that is also the road less traveled because it can be rocky.
The road that's easier to travel is to simply increase the dose of the offending agent, and temporarily, that would actually lessen the abnormal involuntary movement. But while causing the temporary improvement, it also simply resets the hypersensitivity threshold, and soon enough it's going to be back and probably worse. So, the easy approach, again, would be to increase the dose again to mask that involuntary movement. But it just resets the threshold one more time, and there's only so much you can do by increasing and increasing the tablet.
Sometimes you have to be with a patient in that sweat equity of trying to reduce that medication—being with them in the uncomfortable initial weeks and assuring them that this is worth the investment. There's a light at the end of the tunnel. If there is still some involuntary movement despite the withdrawal of medication, we can assist it. There are other medications that can help a little bit in improving these abnormal involuntary movements while waiting for natural course to occur.
There are a lot of quality checks. We have employed virtual visits in between the in-person visits because it would be very difficult for a patient with Parkinson disease, Huntington disease, or tardive dyskinesia to come into your office every month or every 3 months. Maybe we can push it, but they have busy lives.
Patients with tardive dyskinesia are usually working in mainstream society, and for them to just get off work every now and again to see a doctor can be a little bit difficult. But if you sprinkle the visits with a virtual platform interspersed with an in-person platform, then it becomes more manageable. They can sneak in during their break, have that 15- to 20-minute visit with you, have a quality check on whether they need to increase their dose—some may be falling off the bandwagon and need to be assured to carry on the course because the trend is correct—and they need that. In between in-person appointments, they need these virtual visits to keep them on track and make sure that they're with the program still. That's one thing we employed.
The other thing is sometimes it takes a village to provide the correct care. The neurologists are focused on the physical. We could do some handholding on the emotional part, but the psychiatrist and the psychologist are at the forefront of that part of the care. Sometimes, if they're not in the same department or in the same center, it can be very hard to communicate with a psychiatrist or a psychologist from a different institution. Being all in one center, we are bound by the same electronic medical record system. We message each other, we page each other, we text each other, and we have the same medical record number for that same patient. Communication is a lot easier.
I could simply message my psychiatrist and say, "Physically, she's doing well, but emotionally she's a wreck. I need you to intervene here because I'm out of my league with regards to how to manage the emotional part." It's so much easier to communicate with the psychiatrist within your department doing this. So, those are the things we do to keep the quality of the care we provide for each of our patients with tardive dyskinesia.
What advice do you have for long-term care clinicians and medical directors looking to improve detection, documentation, and management of tardive dyskinesia in their facilities?
Dr Fernandez: The first thing is to be comfortable with the diagnosis. Unfortunately, tardive dyskinesia is a chameleon. They could present with anything, and they could present with any severity, from mild and blending in with their normal day-to-day activities, to something that sticks out because it's bad. Being aware of how tardive dyskinesia presents is the first order of business, as I mentioned, in the care of that patient.
Fortunately, the makers of our FDA-approved drugs for tardive dyskinesia offer online and in-person courses and educational events that make clinicians aware of the clinical presentation of tardive dyskinesia. Most neurologists, during their training period, will come across tardive dyskinesia, and they're fairly comfortable.
The irony of this is that the ones who are able to easily diagnose tardive dyskinesia—the neurologists—are the least comfortable in treating the underlying disorder that causes tardive dyskinesia. The ones that have to know where the success of tardive dyskinesia falls most, which is keeping their emotions and the behavioral aspect of their condition in check and under control, are the psychiatrists and the psychologists. They're the least comfortable in the diagnosis of tardive dyskinesia.
The neurologists, the psychiatrists, and the psychologists need to talk, because one is good at diagnosing but not very good at managing the emotional side. One is very good at managing the emotional side but not very good at diagnosing it. If you're not confident, it could be staring at you and you're not going to recognize it. If you've never seen this type of fruit, you won't know it's a fruit because you've never seen it, even if it's practically in front of your face. The same thing applies here. Education is the biggest key.
PCPs, psychiatrists, and psychologists are the first people who would come across this, and their radar for this condition should be heightened a little bit. They then refer them to us, and we'll take care of the rest in concert with their management of the behavioral aspect—because it's a balance: we want to withdraw the offending agent, but we don't want to destabilize them emotionally, and we want to introduce something that may or may not destabilize their emotional well-being as well.
It's a tight rope, in the end, but we try to cross that as best we can with a patient, and a lot of them get to the finish line, which is great.
