Psychiatry

Tardive Dyskinesia

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The Impact of Tardive Dyskinesia on Patients and Caregivers

patient care perspectives by Leslie Citrome, MD, MPH
Overview

The impact of tardive dyskinesia (TD) extends beyond the involuntary movements themselves, disrupting patients’ psychological well-being, social lives, physical functioning, and ability to work. TD can also have a significant impact on caregivers. Early recognition, treatment, and education are crucial, as many patients with untreated TD may discontinue their other therapy due to stigma and exacerbated symptoms, which worsens outcomes.

“TD is not just a movement disorder in that the movements in a patient with TD have consequences that impact their psychological, social, physical, and vocational health.”
— Leslie Citrome, MD, MPH

TD is not just a movement disorder in that the movements in a patient with TD have consequences that impact their psychological, social, physical, and vocational health. Caregivers and even other patients can also be impacted by the consequences of the disorder.

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We do have some data regarding the impact of TD, including on the treatment of the underlying condition. For example, in a survey of more than 250 patients with TD, nearly 50% of individuals reported skipping doses or taking less medication than prescribed. Approximately 40% stopped taking their antipsychotic medication altogether, and more than 35% stopped seeing their physician for treatment. Remarkably, approximately 20% of patients with TD reported advising someone else not to take antipsychotic medication. That gives you an overview of the kind of disruption that this condition causes.

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As noted previously, there can be psychological, social, physical, and vocational impacts of TD resulting in functional disability. The psychological impact of TD can contribute to a lack of adherence to medication, which can lead to poor response, relapse, and even rehospitalization. In addition, a patient with TD can experience worsened anxiety, depression, and embarrassment. When surveyed, more than 75% of patients with TD reported negative psychological or psychiatric consequences of their TD.

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Regarding the social impact of TD, the condition can affect relationships and friendships and can lead to social avoidance and withdrawal. Small movements can have a major impact on patients and the people around them, even when patients are unaware of their symptoms. For example, I have had patients with TD whose families do not take them to the mall anymore because everyone stares at them. While the person with TD is unaware of their movements, they do recognize the staring. Approximately 75% of patients reported a social impact of TD on their day-to-day activities.

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In addition, more than 90% of patients reported that their TD affects their physical functioning, and approximately 70% reported experiencing pain. Other impacts include difficulty with teeth, biting the lip and tongue, eating, breathing, speech, gait, and balance. Nearly 80% of patients with TD reported difficulty with basic household chores, and approximately 75% reported difficulty eating, holding objects, or speaking clearly.

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The vocational impacts of TD that have been reported include decreased work productivity and missed educational and vocational opportunities, as well as promotions. Nearly 75% of patients surveyed reported that TD negatively impacts their ability to work, and approximately 32% of patients reported abandoning or avoiding education.

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Regarding the impact of TD on caregivers, nearly 24% of caregivers participating in a more recent survey reported a severe impact of the patient’s TD on their own functioning. This impact includes work impairment, absenteeism, presenteeism, and psychological and social impacts such as feeling anxious or worried and reduced social engagement.

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All these impacts have serious implications for poorer outcomes in patients with conditions such as schizophrenia, bipolar disorder, and major depressive disorder, conditions for which antipsychotic medications are commonly prescribed. And, remarkably, TD often goes undiagnosed. Patients and families are often unaware that it is a treatable movement disorder. So, there is a need for greater recognition of TD by clinicians, caregivers, and patients, along with the institution of early and effective treatment.

References

Farber RH, Stull DE, Witherspoon B, et al. The Tardive Dyskinesia Impact Scale (TDIS), a novel patient-reported outcome measure in tardive dyskinesia: development and psychometric validation. J Patient Rep Outcomes. 2024;8(1):2. doi:10.1186/s41687-023-00679-4

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Jackson R, Brams MN, Carlozzi NE, et al. Impact-Tardive Dyskinesia (Impact-TD) scale: a clinical tool to assess the impact of tardive dyskinesia. J Clin Psychiatry. 2022;84(1):22cs14563. doi:10.4088/JCP.22cs14563

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Jackson R, Brams MN, Citrome L, et al. Assessment of the impact of tardive dyskinesia in clinical practice: consensus panel recommendations. Neuropsychiatr Dis Treat. 2021;17:1589-1597. doi:10.2147/NDT.S310605

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Jain R, Ayyagari R, Goldschmidt D, Zhou M, Finkbeiner S, Leo S. Impact of tardive dyskinesia on patients and caregivers: a survey of caregivers in the United States. J Patient Rep Outcomes. 2023;7(1):122. Published correction appears in J Patient Rep Outcomes. 2024;8(1):51.

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Jain R, Ayyagari R, Goldschmidt D, Zhou M, Finkbeiner S, Leo S. Impact of tardive dyskinesia on physical, psychological, social, and professional domains of patient lives: a survey of patients in the United States. J Clin Psychiatry. 2023;84(3):22m14694. doi:10.4088/JCP.22m14694

Leslie Citrome, MD, MPH

Clinical Professor
Department of Psychiatry and Behavioral Sciences
New York Medical College
Valhalla, NY

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