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Facing TD: The Social and Emotional Impact of Tardive Dyskinesia

Greg W. Mattingly, MD

Associate Clinical Professor
Washington University School of Medicine
St Louis, Missouri
Midwest Research Group
St. Louis, Missouri

Greg Mattingly, MD, has disclosed that he has received consulting fees from AbbVie, Acadia, Alkermes, Axsome, Eisai, Ironshore, Intracellular, Janssen, Lundbeck, Neos, Neurocrine, Otsuka, Redax, Roche, Rhodes, Sage, Shire, Sunovion, Supernus, Takeda, Teva, and Trispharma; funds for research support from AbbVie, Acadia, Alkermes, Avanir, Axsome, Boehringer Ingelheim, Emalex, Janssen, Medgenics, NLS-1 Pharma AG, Redax, Roche, Sage, Shire, Sunovion, Supernus, Takeda, and Teva; and fees for non-CME/CE services from AbbVie, Alkermes, Eisai, Janssen, Lundbeck, Neurocrine, Otsuka, Sunovion, Supernus, Takeda, and Trispharma.

View ClinicalThoughts from this Author

Released: September 27, 2021

Imagine a mom with bipolar disorder embarrassed to attend her daughter’s wedding, a 23-year-old with high functioning Asperger syndrome who develops involuntary tremors, or an individual with schizophrenia who now avoids looking in the mirror. These are the daily struggles that patients with tardive dyskinesia (TD) face.

As I reflect on my 30 plus–year career in mental health, I think about the many lectures and training sessions I have received on how to evaluate TD. I’ve been trained on where to examine, how to activate, and how often to screen. I’ve learned about the homunculus, the motor strip, and the Abnormal and Involuntary Movements Scale (AIMS) but never once have I been trained to ask about the emotional or social impact of TD: “How is this affecting your daily life? Your interactions with others?” “Do you avoid . . . ” or “Are you embarrassed?”

Tardive dyskinesia was first described in the 1950s as an irreversible medication-induced condition characterized by involuntary dyskinetic movements of the face, tongue, and extremities. But let’s take a moment to reflect on the emotional and social impact of TD.

TD Prevalence
The use of atypical antipsychotics has grown and expanded beyond chronic mental health conditions like schizophrenia. We now commonly use atypical antipsychotics in bipolar disorder, augmentation of antidepressants, complex anxiety disorders, and developmental disabilities.

With these expanded indications, the overall use of atypicals has continued to increase with a current prevalence of near 2% of US adults receiving antipsychotics in a recent nationwide survey.1 The diversity of risk for TD was highlighted in a recent study which looked at the Optum outpatient database.2 Among individuals diagnosed with TD, the most common psychiatric diagnoses were:

  • Complex anxiety disorders at 52.7%
  • Mood disorders at 50.3%
  • Schizophrenia at 45.7%

This study highlights that although TD is still highly prevalent among individuals with schizophrenia, the most common cases in a clinical practice may involve diagnoses other than traditional chronic psychotic illness.

Do Patients Notice Their TD?
I have been often told that patients must have a thorough examination to detect TD, but can patients evaluate their own TD? The gold standard for evaluating TD has been the healthcare professional–administered AIMS.

Recent studies have explored the utility of patient-rated screening tools compared with in-person physical examination for detecting TD.3 Examinations by healthcare professionals found TD in the face, lips, and tongue in 66% of patients; hands and fingers in 59%; trunk in 21%; and lower limbs in 42%. This study highlights the need to look beyond the face, lips, and tongue and found that more than 50% of patients had TD in 2 or more body regions.

Of even more importance, this study found that when patients were given a diagram of the body and asked if they had experienced any abnormal movements in their head/face, neck/trunk, upper extremities, or lower extremities, patients were excellent self-reporters with high levels of correlation compared with clinical examination (P <.001). This study highlights that patients were aware of their TD and were excellent self-reporters when asked.

Looking Beneath the Surface
If patients are able to notice and evaluate their TD, how do these symptoms affect their overall well-being? One can only imagine a mother who is embarrassed because she now has disfiguring movements of her lips and tongue, a young man with developmental disabilities who tries to marshal the courage to go for a job interview, or an older individual with a complex mood disorder who is now embarrassed to participate in social and community functions.

A recent study by McEvoy and colleagues4 highlights the social and emotional impact of TD. Their study looked beneath the surface to evaluate the social, emotional, and overall quality of life in a broad array of individuals with TD. Thirty-four percent of participants in this study had bipolar disorder, 34% had major depression, and 33% had schizophrenia who were diagnosed with TD. Not surprisingly, TD was associated with higher ratings of social withdrawal, worsened internalized stigma, and significantly lower ratings on overall quality of life. An equally important take-home message was that as TD worsened, patients became significantly more socially isolated and withdrawn.

Hope Where Options Have Been Limited
The real-world impact of TD was recently explored by examining the social media posts of individuals with TD. Perhaps a surprise was that individuals were more likely to discuss the emotional than the physical aspects of TD. Common posts were: “feel,” “worse,” “permanent,” “weird,” “horrible,” and “hate.”5

With the FDA approval of the vesicular monoamine transporter type 2 (VMAT2) inhibitors, healthcare professionals now have options to improve the quality of life in individuals with TD. Pivotal trials of both deutetrabenazine and valbenazine allowed patients to stay on their antipsychotics, antidepressants, or mood stabilizers when warranted. Treatments with both of the approved VMAT2 inhibitors have consistently shown improvement in TD with minimal risk of worsening mood, psychosis, or other underlying psychiatric conditions.


  1. Dennis JA, Gittner LS, Payne JD, Nugent K. Characteristics of U.S. adults taking prescription antipsychotic medications, National Health and Nutrition Examination Survey 2013-2018. BMC Psychiatry. 2020;20:483.
  2. Loughlin AM, Lin N, Abler V, et al. Tardive dyskinesia among patients using antipsychotic medications in customary clinical care in the United States. PLOS One. Published: June 4, 2019 https://doi.org/10.1371/journal.pone.0216044.
  3. 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;40:259-268.
  4. McEvoy J, Gandhi SK, Rizio AA, et al. Effect of tardive dyskinesia on quality of life in patients with bipolar disorder, major depressive disorder, and schizophrenia. Qual Life Res. 2019;28:3303-3312.
  5. Farrar M, Lundt L, Franey E, et al. Patient perspective of tardive dyskinesia: results from a social media listening study. BMC Psychiatry. 2021;21:94.

Your Thoughts?
Tell us about your thought process when you see a patient with suspected TD. What techniques have you used to differentiate medication-related movement disorders? Which TD clinical cases have been most challenging to recognize and diagnose? Please share your experiences and thoughts in the comments box.

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