The Vital Need to Recognize Tardive Dyskinesia


The professor emeritus of psychiatry at the University of Pennsylvania’s Perelman School of Medicine discussed the imperative need for physicians to recognize tardive dyskinesia.

Dr Stanley Caroff

Stanely N. Caroff, MD, professor emeritus of psychiatry at the University of Pennsylvania's Perelman School of Medicine

Stanely N. Caroff, MD

For Stanely N. Caroff, MD, professor emeritus of psychiatry at the University of Pennsylvania’s Perelman School of Medicine, one of the most important parts of treating tardive dyskinesia—a “forgotten” condition, as he put it—is simply recognizing it.

In 2017, the FDA approved a pair of therapies, valbenazine (Ingrezza) and deutetrabenazine (Austedo), for the treatment of tardive dyskinesia in adults. Their approvals denoted the beginning of a new era, one marked by an improved armamentarium for the physicians treating the condition and patients suffering from it. For Caroff, it has made for a time of hope.

Although, as with many disorders, there are still challenges that linger. To provide some insight into these needs, and Caroff spoke with NeurologyLive in an interview, and shared his experience with the condition.

NeurologyLive: Are there remaining unmet needs in tardive dyskinesia despite the introduction of new therapies?

Stanley Caroff, MD: A question that has received renewed attention relates to the impact of tardive dyskinesia on quality of life and the related cost-effectiveness of the new treatments. To what extent is treatment valuable to patients and families, not only in reducing the symptoms of tardive dyskinesia but improving the lives of patients who have it? Fortunately, several studies are now being conducted to specifically address the functional, social and psychological impact of having tardive dyskinesia, which had not been adequately studied or appreciated in the past. Early studies and resulting conventional wisdom suggested that patients were not bothered by tardive dyskinesia, but these studies were biased by the older age of the subjects who were often chronically-ill and institutionalized. Evidence from more recent studies shows that people with more functional lives socially and occupationally are quite aware of, embarrassed by and self-conscious in relation to tardive dyskinesia. We’re learning that the social impact of tardive dyskinesia is much more significant than people had assumed in the past. I’d add that severe tardive dyskinesia, which may occur in about 5% to 10% of patients, can actually lead to physical disability and compromise eating, talking, breathing, and walking. But even the milder forms of tardive dyskinesia can have a significant impact on quality of life. There’s still a lot of very important research to be done.

What’s the current research focus for tardive dyskinesia? Is it more focused on addressing the development of tardive dyskinesia or new ways to treat it?

Well, both really. Current research that’s been stimulated by the marketing of the new VMAT2 inhibitors is primarily practice- and clinically-focused on how best to use these drugs; how best to recognize, screen, monitor, and prevent tardive dyskinesia; how to predict the course of tardive dyskinesia; and developing strategies for managing people in relation to antipsychotic therapy. Much of current research is practical and focused on empirical questions practicing neurologists and psychiatrists need answers to. But in addition to clinical research, there are intensive ongoing basic research studies in neuroscience on the mechanisms of movement disorders that promise to provide insights into future strategies for preventing and treating tardive dyskinesia.

Do you have any advice for the clinician community on recognizing or treating tardive dyskinesia?

It’s vital, once again, to learn to recognize and diagnose tardive dyskinesia, to distinguish it from other common movement disorders, and know the many forms it takes. We need to foster basic doctoring skills to thoroughly evaluate patients who are at risk for tardive dyskinesia, essentially anyone taking antipsychotic drugs. To monitor them routinely, every time you see them. To ask them about and to observe them for any new movements. Also, to involve their caregivers, family, friends, or caretakers. Have they noticed any movements? And to enlist their collaboration by making them aware of tardive dyskinesia as a risk factor.

It all comes down to being a good doctor. Making sure you’re using antipsychotic drugs for the proper indications, not overprescribing, to inform patients about the risk, and then to monitor them carefully. That’s what we need to re-learn, fundamental skills of patient care.

In terms of treatment, the new VMAT2 inhibitors represent a significant advance. It’s important to learn how to use them properly, within the context of an overall informed approach to psychopharmacologic management. I would just summarize that while it’s a new day with new hope for patients, the introduction of approved treatments for tardive dyskinesia has also served to stimulate renewed interest in a neglected disorder.

Transcript edited for clarity.

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