Tardive Dyskinesia Unmasked: The Importance of Routine Screening (Episode 1)

Sponsored and developed by Neurocrine Biosciences, Inc.

Moderator: Welcome, listeners! Today is the first episode of a two-part series which will discuss tardive dyskinesia, or TD, an involuntary movement disorder that can negatively impact those who experience it. The uncontrollable movements of TD go beyond the physical and can have emotional and social consequences, such as worry, frustration and self-consciousness.

Our guest today is Dr Craig Chepke, a board-certified psychiatrist, the Medical Director of Excel Psychiatric Associates in Huntersville, North Carolina and an adjunct associate professor of psychiatry for the Sandra and Leon Levine Psychiatry Residency Program at Atrium Health. He is a board member of the CURESZ Foundation, a nonprofit supporting individuals with schizophrenia. He has also been honored as a distinguished fellow of the American Psychiatric Association.

Dr Chepke is here to help us learn more about TD, including the importance of screening and how it differs from other drug-induced movement disorders.

Dr Chepke: Well, thanks so much for having me. I'm really excited to be here today to shine a spotlight on TD. I'd also like to thank Neurocrine Biosciences who compensated me for being here today to share my perspective.

Moderator: Fantastic, let's jump right in. As mentioned at the top of the episode, TD is an involuntary movement disorder. But can you give us a 1-minute clinical summary of TD?  

Dr Chepke: Oh, it's hard for me to contain myself to one minute on anything, but I'll do my best. So, TD is also known as tardive dyskinesia, which is a persistent, involuntary movement disorder, and it's characterized by uncontrollable movements that are abnormal and repetitive. It can occur anywhere in the body, but most often the face. It could be in the torso, the limbs, the fingers, the toes, but really any muscle can be affected. It's what we call a drug-induced movement disorder, and specifically, it's associated with medications and when I say drug-induced, that means medication-induced, in this case, medications that block the dopamine receptor. Most commonly, for myself as a psychiatrist, that would be an antipsychotic medication, but other meds can cause it as well (such as certain prescription medicines used to treat gastrointestinal disorders), and it is fairly prevalent.

There was a 2017 meta-analysis of 41 studies—it was very large—and in that meta-analysis between 7% to 30% of people taking antipsychotics did have TD. The reason they call it tardive is because, unlike other drug-induced movement disorders, it doesn't start early on. Tardive comes from the French stem of tardive, like if your kids are late to school, they're marked tardy. So, it doesn't come on until later, at least 3 months generally after starting the medication, but it could be potentially years or decades after. The unfortunate thing is that TD is unlikely to improve without treatment. As I said, it's generally persistent, and it can range in severity. It could be mild, moderate, severe. The presentation can be very different in different individuals.

Moderator: Can you tell me why that is?

Dr Chepke: Well, there's a lot of factors, but the impact of the uncontrollable movements isn't really fully understood by either the person who's experiencing them or, honestly, the healthcare provider. And that can lead to dismissal of symptoms on either side and a delay in an accurate diagnosis. Also, I think a big factor is that historically there's been really little to no training on TD for psychiatric clinicians, regardless of their educational background.

Moderator: So, what can be done to solve the delay in diagnosis?

Dr Chepke: I think one of the most important things we can do is implement routine TD screenings. In 2020, the American Psychiatric Association (APA) released their Practice Guideline for treatment of people with schizophrenia. Within it, they had recommendations about tardive dyskinesia, and even though it was contained in the schizophrenia treatment guidelines, it's generally accepted that those can be broadened to any individual living with TD, not just for people with schizophrenia living with TD. So, what they recommend is that there should be routine screening when starting an antipsychotic, before changing an antipsychotic or other dopamine-blocking medication and then to monitor for signs of TD at each and every visit. And then periodically conducting a structured TD assessment every 6 to 12 months, depending on the individual's underlying risk. And obviously, if any new or worsening movements are detected at any visit, do not pass go; go directly to a structured screening for TD. But it's really the proactive recognition and treatment of TD that can make a positive impact on the lives of many people with different psychiatric challenges. It's really important to initiate conversations with people to uncover the potential presence and, more importantly to me, the burden of TD.

Moderator: So, practically speaking, how is that done?

Dr Chepke: Well, first off, just identifying uncontrollable movements starts with simple observation of the person by anybody who's in the office. It's like the TSA says: if you see something, say something. The nursing and medical assistants who interact with them, the person at the front desk—for instance, in my practice, my mother is actually my secretary, and she has no formal medical training, but I've instructed her that if you see someone moving in a way that you think is not normal, just shoot me a message before I take them back and I'll pay extra attention to it. Because oftentimes in the waiting room, they might show some movements that we may not see, and then, as I'm taking them back, I'm just watching them on as they walk on the way to the exam room. I noticed in the past, I used to be signing papers or whatever, and that was throwing away a valuable chance to be able to observe people for the uncontrollable movements.

But that extra heads up from other members of the care team can really make it more accessible for us to be able to find the movements if we're looking for them more proactively. Once we get into the exam room with the individual, then the provider should be observing the person both at rest and during physical or cognitive activation maneuvers. That part's really critical. I like to say that just like you have to activate a credit card before you use it, you've got to activate people if you're going to see TD. Because people, when they're at home, they're not just sitting in a chair talking to us like they do during our appointments; they're getting up, moving around, talking to people, using their brains for various things. Anything that puts a physical or mental stress on a person will exacerbate or highlight the movements of tardive dyskinesia and other hyperkinetic movements.

So, I mentioned earlier, standardized assessments for TD. The most common one is the Abnormal Involuntary Movement Scale, which we abbreviate as the AIMS, and it's 12 items long. It's observer-rated, so it's not the individual rating it with a possible movement disorder, it's us. And that's a subjective measurement to identify the movement. It's pretty much the standard structured instrument for assessing the severity of TD movements, although there are some other ones that may be used.

Something in addition to that, or supplementary to it, maybe, might be the MIND-TD Questionnaire. So, that can be helpful with the semi-structured TD assessments that the APA recommends we should be doing at every visit. Because it's not recommended that we do an AIMS exam every visit, but a semi-structured exam every visit, and the MIND-TD Questionnaire can give some structure to that. It's intended to guide our exam of people at risk of TD and then, if TD is suspected, what are the next steps that we should be taking to further assess and evaluate it? But importantly, I want to make sure that everyone's clear, these are screening or tools to assess the severity, not diagnostic tools. It's a clinical diagnosis, so the diagnosis of TD should be based on each person's medical history, their symptoms, and then obviously, as clinicians, our best judgment.

Moderator: So, given that you're looking at uncontrollable movements, how do you distinguish TD from other drug-induced movement disorders?

Dr Chepke: Oh, I'm so glad you asked that because that is a really, really important question. Different drug-induced movement disorders have different characteristic movements, for one. Other aspects of the person's history can provide clues to which one it is, including the duration of the symptoms, what their medication history is, and then the effects of any recent medication changes. So, for example, what I mean by that is that people who experience drug-induced parkinsonism usually experience slowing of movement and rigidity of the muscles. They also may experience tremors, which is different from the characteristic movements of tardive dyskinesia. And then, in terms of the medication changes, TD may be revealed or worsened with a decrease in the antipsychotic dosage, which is the opposite of what you would expect, right? So, for instance, there's a tendency for symptom improvement with discontinuation or reduced dosage of things like drug-induced parkinsonism, acute akathisia or acute dystonia, which are some of the most common short-term movement disorders associated with medications.

So, taking a look at the individual and seeing what, phenomenologically, what are they experiencing? The movements of TD are not rhythmic the way that tremors are, for one. They do have a little bit of a pattern; you can kind of guess where movements are going to be, but not the exact same thing over and over again. I like to say a tremor is kind of like a metronome or a clock, tick-tock, tick-tock. It's the same thing over and over again, as if you had a video that's on like a one- or two-second loop. It's playing the same thing over and over again. That's what a tremor would be like. Whereas, dyskinetic movements, then it's not the same thing over and over again. And that's really important.

Akathisia, that's the internal sense of restlessness that the person experiences. You should notice restlessness in most cases, but the key is that the person feels restless, like they can't stop moving. And dystonia is a sustained muscle contraction, so those are phenomenologically how you separate them out.

Moderator: And these other drug-induced movement disorders would be managed differently, correct?

Dr Chepke: Yeah, absolutely. And that's the important part. If they were all managed the same, then it wouldn't be such a big deal if we didn't get the diagnosis right. But, in medicine, generally, an incorrect diagnosis is going to lead to an incorrect treatment, and that's what makes an accurate and timely TD diagnosis so, so critical. Just like it's clinically distinct from other drug-induced movement disorders, the management strategies do definitely differ.

So, one thing that we do as a psychiatric clinician, very commonly, is prescribe anticholinergics for antipsychotic-induced movement disorders, like benztropine is the most common one that I see in practice. And while that can be used for some drug-induced movement disorders, its use in TD is NOT. Let me repeat that: it is NOT recommended and can worsen the symptoms of TD, unfortunately.

Moderator: In terms of managing the symptoms of TD, can you explain the impact that it has on individuals who experience it?

Dr Chepke: Absolutely. So, people living with TD are impacted in a lot of ways, but they are impacted physically; they may struggle from a functional perspective with various tasks we take for granted, such as being able to work, to drive, to walk in a straight line, just to button their shirt, or put in earrings, put on makeup—things like that—or even eating and drinking because the movements of TD can affect not just the muscles we see, but the muscles we can't see, including the diaphragm, the esophagus, the soft palate, things of that nature.
 
So, every movement is going to affect individual people differently. So, take for example, a teacher. I have a patient who falls into this category. He's a high school teacher, and when he developed TD, he was also a football coach, and that was really his life, was coaching athletics. The students that were on the team would make fun of the movements in his face, and he thought he was going to have to give up coaching altogether because he didn't think that he could be a leader of the team in that regard. So, someone like that might be more bothered by facial movements when speaking in front of individuals.

And then, if there’s someone in a different profession, you know, maybe someone who is a computer technician or uses their hands for other fine movements. Well, if they have hand movements, that could really impact them. Think about a musician, a piano player, or someone who plays violin. I have another one of those patients who was a classically trained violinist. He didn’t do it as a profession, but it was a hobby of his, and he wasn’t able to play the violin. But beyond just the physical, I wanted to stress that TD negatively impacts the emotional and the social well-being of people who are living with it. Those uncontrollable movements can cause worry, frustration and self-consciousness. People living with TD may feel judged or ashamed, and there’s already a lot of stigma associated with mental health, and TD, I think, just adds on top of that cumulatively. And it adds to that sense of worry, isolation and stigma.

In a recent survey that was conducted, about two-thirds of people with TD experienced moderate to severe involuntary movement symptoms, and they reported that their mental health had been impacted by their involuntary movements. Just over half of people reported that their social life was negatively affected by the TD. So, with this in mind, it's really important to recognize the positive impact we can have as providers by just simply taking the time to initiate conversations with people. Because even if we see the movements, we've got to try to uncover the potential presence and the burden of TD. We start with simple questions to help assess how the TD might be affecting their everyday lives. Those things like:

• Do the movements make you feel nervous? Do you get embarrassed around other people if they’re happening or noticing people who are commenting on them?
• How has your social life changed because of the movements? and
• Has your day-to-day routine changed because of these movements?

So that's something that we really have to not take for granted is that people will change their routines for a lot of reasons. They may not be able to associate why. They notice that they're not going out as often. They don't feel as sociable as often. And we could easily attribute that to an underlying mental health condition like depression or in schizophrenia, something like negative symptoms. And the individual living with it may not be able to tell us it's the movements. So, we have to try to draw that out of them and also get collateral information as well because, often, an individual with TD might not be able to draw those connections. But someone who knows them well might be able to say, yeah, this all started, these changes, when I started noticing these movements.

Moderator: Wow, such great information. As we begin to wrap up, I wanted to ask: What do you see as the biggest challenge in TD diagnosis and care? And then, as a follow-up, what can practitioners do to help solve it?

Dr Chepke: Really good question. You know, I think our current challenge is improving the timely recognition in TD. That's job number one because if you don't notice it, you have no chance to do anything about it. And if we recognize it early, we may be able to intervene early with treatment strategies.

And, as I said over and over again, these symptoms are incredibly disruptive, perhaps more so than a person lets on or even recognizes at all. I mean, they may have developed ways to cope with it and learn to live with it. You know, we talk about this in psychiatry all the time. It's their “new normal.” But the thing is, it's our responsibility to figure out and help discern the wide, wide-ranging impact of TD on the person and provide them with some potential treatment strategies to consider.

Even people that may have what we would call, based on the severity of the movements themselves, "mild" TD symptoms, they can experience really negative impacts on their quality of life and may benefit from receiving treatment, so we should offer the treatment. It's really important that clinicians make routine screenings for TD standard of care for people in their practice, for people treated with antipsychotic medication. It's not enough to just wait until you suspect something, it's got to be routine screening. Not something heroic, something we just do every day, like we do mental status exams and document those. We got to do these movement disorder screenings every day and document it.

Moderator: Fantastic, such great information. And on that note, please be sure to tune in to Part 2 of this conversation, available soon, as we hear from someone living with TD and dive deeper into important conversations between practitioners and patients, while discussing guideline-recommended treatment strategies for TD.

Thank you so much to Dr Chepke for joining us today. It has been such a pleasure having you here.

Dr Chepke: Oh, likewise. It's been a pleasure being here and thank you so much for facilitating this important discussion, and I can't wait to join you for Part 2!

Moderator: In the meantime, if you would like to dig deeper into the topics covered in today's discussion, please visit MIND-TD.com, that's MIND hypen TD dot com.