The Effects of Tardive Dyskinesia on Patient Physical Wellness, Social Functioning

Physical wellness and social functioning are decreased among patients with possible TD who are aware of their involuntary movements and who rated them as having a lot of impact on their daily activities.

In patients with possible tardive dyskinesia (TD), especially those aware of their own abnormal movements, physical wellness and social functioning are decreased, according to the findings of a large, observational study published in the Journal of Patient-Reported Outcomes.

TD is a persistent, potentially disabling movement disorder that has been linked to exposure to antipsychotics and to other dopamine receptor-blocking agents. All individuals who are being treated with any type of antipsychotic medication should receive regular screenings for possible symptoms of TD, such as abnormal, involuntary movements in the face and mouth, neck and trunk, upper extremities, and lower extremities.

TD may be reversible if diagnosed early in certain individuals, who could then be safely weaned from antipsychotic agents and followed up over time. When TD initially emerges, it may be appropriate to attempt to taper a patient off antipsychotic agents.

Researchers examined data from the prospective, observational, multicenter, real world RE-KINECT study to evaluate the effects of potential TD on patients’ physical health and social functioning. The study was conducted at 37 outpatient psychiatry clinics (ie, research institutions, community health centers, and private practices) in 19 states in the United States between April 2017 and January 2018.

For patients not aware of their TD, discussion with caregivers may be needed to determine the impact of TD on patients’ health and daily activities.

A total of 1,148 individuals underwent screening and all participants were assigned to 1 of 2 cohorts according to clinician evaluation.

Modified Cohort 1 (n=450) included patients with no abnormal involuntary movements or whose movements were not consistent with possible TD assessment based on clinician assessment, the researchers explained.

Cohort 2 (n=204) included patients who had abnormal involuntary movements that were confirmed by their clinician as possible TD. These individuals had a clinician-rated severity of potential TD as “some” or “a lot” in 1 or more of the following regions of the body: head/face, neck/trunk, upper extremities, and/or lower extremities.

Cohort 2A (n=110; “aware”) included patients with clinician-confirmed positive TD who also self-reported having abnormal involuntary movements within the past 4 weeks and had a self-rated severity of “some” or “a lot” in at least 1 of the 4 body regions, the researchers explained. Cohort 2NA (n=94; “not aware”) included patients with possible TD who self-reported having no abnormal involuntary movements in the past 4 weeks.

Researchers looked at the following assessments: the EuroQoL’s EQ-5D-5L utility (health), the Sheehan Disability Scale (SDS) total score (social functioning), patient- and clinician-rated severity of possible TD (“none”, “some”, “a lot”), and patient-rated impact of possible TD (“none”, “some”, “a lot”).

The findings revealed that among Cohort 2 participants who were aware of their abnormal movements, the patient-reported impact of TD was highly and significantly associated with EQ-5D-5L utility (regression coefficient [RC], –0.023; P <.001) and SDS total score (RC, 1.027; P <.001).

Additionally, patient-rated severity was significantly associated with EQ-5D-5L utility (RC, –0.028; P <.05). Further, although clinician-rated severity was moderately associated with both EQ-5D-5L and SDS, the associations were not statistically significant.

Study limitations included the fact that RE-KINECT was supposed to be a screening analysis of possible TD, with no requirement for a “formal” TD diagnosis. Further, even though the EQ-5D-5L and SDS are both well-established, standardized instruments, neither of them has been specifically validated for use in patients with TD.

“These outcomes suggest that in addition to assessing the presence and severity of patients’ abnormal movements during usual care visits, clinicians or their staff may need to ask patients about how TD adversely affects their HRQoL [health-related quality of life] . . . and consider these impacts when making and evaluating treatment plans,” the researchers indicated. “For patients not aware of their TD, discussion with caregivers may be needed to determine the impact of TD on patients’ health and daily activities,” they concluded.

Disclosure: Some of the study authors have declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures. 


Tanner CM, Caroff SN, Cutler AJ, et al. Impact of possible tardive dyskinesia on physical wellness and social functioning: results from the real-world RE-KINECT study. J Patient Rep Outcomes. Published online March 9, 2023. doi:10.1186/s41687-023-00551-5