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​Listen in as Dr Greg Mattingly and nurse practitioner Tammy LeBlanc-Russo share their clinical experiences with tardive dyskinesia and discuss best practices for tardive dyskinesia screening.

This podcast, “Life Interrupted: The Consequences of Tardive Dyskinesia,” is a promotional educational program sponsored and co-developed by Neurocrine Biosciences and is not certified for continuing medical education. The speakers are presenting on behalf of and are paid consultants for Neurocrine Biosciences. The information presented is consistent with FDA guidelines.

Dr Mattingly: Hi, I’m Dr Greg Mattingly, a psychiatrist in St. Louis, Missouri, where I’m also an associate clinical professor at Washington University and the head of the Midwest Research Group. Joining me is Tammy LeBlanc-Russo, a psychiatric nurse practitioner in upstate New York. Today, we are talking about tardive dyskinesia—particularly its impact on patients.

Ms LeBlanc-Russo: I’m pleased to join you, Dr Mattingly. This is an important topic. Many of our colleagues may not be thinking about tardive dyskinesia, because they believe that, with second-generation antipsychotics, it’s not a big deal anymore.1

Dr Mattingly: But the numbers tell us tardive dyskinesia is still prevalent,1 right Tammy?

Ms LeBlanc-Russo: Yes. We can’t say, “Oh, it’s rare,” when that’s not the case.2 It may be less noticeable, but we need to look for it.1

Dr Mattingly: Good point. We need to look, we need to ask! My patients don’t typically come in with a crisis of tardive dyskinesia, so it’s easy to miss.3 I think many patients are struggling in silence.

Ms LeBlanc-Russo: I’m frequently the one bringing up tardive dyskinesia with patients when I notice a symptom. For example, I mentioned to a patient that it looked like she was sucking on a piece of candy.4 After I said that, she told me that her sibling was refusing to sit next to her during meals because the sucking noises annoyed her.

This was an impactful problem, but if I hadn’t asked, the patient wouldn’t have mentioned it.

And even the symptoms may not be obvious at the exam. I had a patient whose symptoms were with her feet and toes,4 and I missed it. Now with everything being virtual, it’s even more important to ask the right questions.

Dr Mattingly: It’s interesting because some studies have shown that patients don’t notice tardive dyskinesia. But if you ask the right questions, you find patients are very good reporters.

So as we use telemedicine and digital tools, how do we ask the right questions?

Ms LeBlanc-Russo: Clinicians should have a few key questions to ask the patients that would get them thinking about red flags, and then maybe they can move to the Abnormal Involuntary Movement Scale, which is commonly known as AIMS.5

Dr Mattingly: One study suggested that more than three-fourths of patients with possible tardive dyskinesia knew it was there when asked.5 And when asked if it bothered them, another three-fourths of patients with movements consistent with tardive dyskinesia admitted they were embarrassed.5 Patients might say, “I know something’s wrong but I don’t know quite what it is. Because of the way I look, I’m embarrassed to sit and eat at a dinner table with other people, and I’m embarrassed to be in public or to be with friends.”

Ms LeBlanc-Russo: That’s right. And when somebody’s embarrassed, what does that do to their social interactions? These patients are generally already struggling with other mental health issues, and now we might have to work on self-esteem and self-worth. It can add a whole other layer of illness, I think.

Dr Mattingly: Tammy, I have a family member with schizophrenia. She lives in a group home with other women with chronic mental health conditions. I’ve seen firsthand how tardive dyskinesia is not just having uncontrollable movements; patients might also be embarrassed to come out and interact, be part of a group, to sit at the dinner table, and join social activities.

Ms LeBlanc-Russo: Tardive dyskinesia can impact work life, too.5 I’ve seen folks leaving work early because they feel like somebody is looking at them or staring at them, and that can lead them down a rabbit hole of feeling bad about themselves. They can start getting tearful, and they have to go home for the day.

Dr Mattingly: Our goal in treating mental health conditions is to get people back into life. Get them back holding a job, going to school, and interacting socially. That can be disrupted when you’re embarrassed by the way you look. Tardive dyskinesia can further complicate the mental health burden.

Tammy, we’ve talked about embarrassment and social isolation, but in what other ways can tardive dyskinesia impact function? What would you tell our clinicians out there?

Ms LeBlanc-Russo: I have one patient with very severe tardive dyskinesia who really struggles with activities of daily living. It’s important to ask patients, “Are you having any trouble walking, or do you feel like there’s any kind of odd movement in your hands or in your mouth? Are you having any trouble swallowing?”6

Dr Mattingly: I’ve seen videos where people couldn’t button their buttons, but that’s not typically tardive dyskinesia. That can be parkinsonism or other things, but people with tardive dyskinesia usually have pretty good dexterity. Eye blinking, lip smacking, and finger rolling are more common.6

So we’ve talked about the social impact, and some of the functional aspects. How else might tardive dyskinesia impact mental well-being?

Ms LeBlanc-Russo: Tardive dyskinesia can affect self-esteem, confidence, and self-worth.7

Could that lead to another mood episode? There’s always that question of, “What came first: the chicken or the egg?” So somebody is experiencing a mood episode, now their self-esteem can become impacted by tardive dyskinesia, which can cause them to isolate. What does that do to their mood?

I feel like it’s a snowball effect, really.

Dr Mattingly: Tammy, one of my patients with tardive dyskinesia is a mom with bipolar disorder. She talked about the emotional impact of living with bipolar disorder, and then said, “Look at me now. I have to live with this as well.”

For a patient like this, I like to say we have treatments that potentially lessen the abnormal movements. I think that ray of hope really helps.

Dr Mattingly: Wrapping this up, I’d say tardive dyskinesia doesn’t live in isolation. It can live in combination with emotional, social, and functional complications.7 But we’re understanding more about the neurobiology of tardive dyskinesia and treatments that can reduce the abnormal movements.

Anything else you’d like to add for our listeners?

Ms LeBlanc-Russo: Just that I hope we helped to raise tardive dyskinesia awareness among our colleagues, so we can improve the lives of people out there who are struggling with tardive dyskinesia. I want patients to know they’re not alone, and there are options that can help.

Dr Mattingly: Thanks, Tammy, and thanks to you all for tuning in.

Please explore the other resources available on this website for more detailed information on identifying and diagnosing tardive dyskinesia.

1. Carbon M, Hsieh CH, Kane JM, Correll CU. Tardive dyskinesia prevalence in the period of second-generation antipsychotic use: a meta-analysis. J Clin Psychiatry. 2017;78(3):e264-e278.
2. Cloud LJ, Zutshi D, Factor SA. Tardive dyskinesia: therapeutic options for an increasingly common disorder. Neurotherapeutics. 2014;11(1):166-176.
3. Hansen TE, Brown WL, Weigel RM, Casey DE. Underrecognition of tardive dyskinesia and drug-induced parkinsonism by psychiatric residents. Gen Hosp Psychiatry. 1992;14(5):340-344.
4. Tarsy DT. Tardive dyskinesia. Curr Treat Option Neurol. 2000;2:205-214.
5. Caroff SN, Yeomans K, Lenderking WR, et al. RE-KINECT: a prospective study of the presence and healthcare burden of tardive dyskinesia in clinical practice settings. J Clin Psychopharmacol. 2020;40(3):259-268.
6. Savitt D, Jankovic J. Tardive syndromes. J Neurol Sci. 2018;389:35-42.
7. Data on file. Neurocrine Biosciences, Inc.