Tardive Dyskinesia

Spotlight article

TDIS Validated as Reliable Tool to Capture Patient Experience of Tardive Dyskinesia

The Tardive Dyskinesia Impact Scale (TDIS) is a patient-reported outcome tool designed to assess how tardive dyskinesia (TD) affects patients’ daily lives—including physical function, emotional well-being, and social interaction. Unlike the commonly used Abnormal Involuntary Movement Scale, which is clinician-reported and focused on the severity of observed movements, the TDIS captures the subjective experience of living with TD. Developed through extensive qualitative research with patients and caregivers, and refined based on feedback, the 11-item questionnaire asks patients to rate how uncontrollable movements impact speech, mobility, dexterity, pain, social encounters, and emotional health. Findings from two phase 3 clinical trials (KINECT3 and KINECT4) confirmed that the TDIS is reliable, valid, and responsive to changes in symptom burden over time.

 

Psychometric analyses revealed that the TDIS has two core domains—physical and socioemotional impacts—with strong internal consistency and test–retest reliability. The scale was able to detect symptom improvement during treatment and worsening during medication washout, indicating its usefulness as a monitoring tool in both clinical trials and real-world care. Importantly, TDIS scores had weak correlation with AIMS, highlighting that the two tools measure different aspects of TD and should be used together for a more complete picture. The TDIS fulfills FDA recommendations for incorporating the patient voice into clinical assessments and offers a practical, validated solution for tracking how TD affects quality of life from the patient’s point of view.

 

Reference: 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.

Jessica Jones

DHSc, PA-C, CAQ-Psych

Director of Didactic Education, College of Saint Mary

Featured article

Study Finds Tardive Dyskinesia Movements Lead to Social and Professional Stigma

Tardive dyskinesia (TD) is a potentially irreversible movement disorder caused by antipsychotic medications, marked by involuntary, repetitive movements that can significantly impair quality of life. This study aimed to assess how TD-related movements influence others' perceptions in social and professional settings. Using a randomized, blinded digital survey, general population participants viewed videos of actors simulating either TD or no TD movements and then responded to questions related to employment, dating, and friendship. Separate assessments were conducted for mild-to-moderate and moderate-to-severe TD, with expert physicians confirming the authenticity and severity of the simulated movements using Abnormal Involuntary Movement Scale scores.

 

Researchers found that participants consistently responded more negatively to individuals displaying TD movements across all domains. Compared to control participants, those who viewed actors with TD movements were significantly less likely to consider them for employment, find them attractive, or express interest in friendship. This trend held true regardless of the severity of TD. The results suggest that visible TD symptoms may contribute to stigma, social isolation, and reduced life opportunities. As the first randomized study to quantify the social and professional consequences of TD, these findings highlight the need for increased awareness and strategies to address stigma in this population.

 

Reference: Ayyagari R, Goldschmidt D, Mu F, Caroff SN, Carroll B. An Experimental Study to Assess the Professional and Social Consequences of Tardive Dyskinesia. Clin Psychopharmacol Neurosci. 2022;20(1):154-166. doi: 10.9758/cpn.2022.20.1.154.

Jessica Jones

DHSc, PA-C, CAQ-Psych

Study Reveals Underdiagnosis of Tardive Dyskinesia and Disparities in Clinical Recognition

Tardive dyskinesia (TD), a persistent involuntary movement disorder linked to long-term antipsychotic use, is often underreported or misdiagnosed in routine clinical practice. This retrospective study analyzed electronic health records (EHRs) from over 32,000 US adults with psychotic disorders who were prescribed antipsychotics between 1999 and 2021. Researchers identified patients with either abnormal movements suggestive of TD or documented TD through manual review of clinical notes. While 1,301 patients had clinical indicators of TD in unstructured EHR data, only 64 (4.9%) of them had a formal ICD-coded diagnosis—indicating a significant gap in diagnosis and documentation.

 

Findings suggest racial and clinical setting disparities in TD diagnosis. Black/African American patients were significantly less likely to receive an ICD-TD diagnosis compared to white patients. Patients treated at community mental health centers were more likely to receive a diagnosis than those treated at academic medical centers. These results underscore the need for improved recognition and documentation of TD in clinical settings to ensure timely intervention and equitable access to treatment. Better diagnostic practices could help identify patients who may benefit from newer therapeutic options for managing TD.

 

Reference: Griffiths K, Won Y, Lee Z, Wang L, Correll CU, Patel R. Identifying the diagnostic gap of tardive dyskinesia: an analysis of semi-structured electronic health record data. BMC Psychiatry. 2025;25(1):407. doi: 10.1186/s12888-025-06780-w.

Jonathan Falletta

PA-C, CAQ-Psych

Bringing Tardive Dyskinesia Out of the Shadows in Long-Term Care

Tardive dyskinesia (TD) is often underrecognized in long-term care despite its substantial impact on older adults, many of whom are prescribed antipsychotics for various conditions. These medications, frequently used beyond their original indications, can trigger TD even after short-term or low-dose exposure. With a growing population of residents with chronic mental illness and extended antipsychotic use, regular screening—such as with the Abnormal Involuntary Movement Scale—is essential. It’s equally important to distinguish TD from other movement disorders like dystonia or akathisia, as their treatments may worsen TD.

 

TD symptoms can range from subtle facial movements to more disabling limb or trunk motions, often interfering with daily activities and contributing to isolation. Many residents experience a decline in independence, and caregivers also report emotional and functional burdens. The RE-KINECT study reinforces this dual impact. Fortunately, FDA-approved VMAT2 inhibitors offer effective treatment, even in older adults. As seen in the case of Sophia, early intervention can significantly improve both physical symptoms and emotional well-being. Collaboration among clinicians and caregivers is key to identifying TD early and restoring quality of life.

 

Reference: Patel A, Whitt T. Burden and Impact of Tardive Dyskinesia (TD) in Older Adults in Long-Term Care Settings. Caring for the Ages. 2025;26(3):16-17. doi: 10.1016/j.carage.2025.04.016.

Jonathan Falletta

PA-C, CAQ-Psych

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