Patient Perspective on Barriers to Diagnosis and Treatment of Tardive Dyskinesia: Results From a Cross-Sectional Survey
Background: Tardive dyskinesia (TD) is a hyperkinetic movement disorder resulting from chronic exposure to antipsychotics. TD is underdiagnosed; understanding barriers to diagnosis is an unmet need. We aimed to understand patient perspectives on barriers to and determinants of TD diagnosis.
Methods: This cross-sectional survey enrolled adults with schizophrenia, bipolar disorder (BPD), or major depressive disorder (MDD) being treated with antipsychotics and reporting TD symptoms. Participants were divided into three cohorts: no formal TD diagnosis (undiagnosed) by a healthcare professional (HCP), diagnosed TD without treatment, or diagnosed TD with treatment. Descriptive analysis was performed with Chi-square/Fisher’s exact test.
Results: 28% of participants (Nf327; mean=46 years) were diagnosed with schizophrenia, 69% with BPD, and 50% with MDD. Fewer participants in undiagnosed (n=171) versus diagnosed cohorts (n=156) discussed involuntary movements with HCPs (P < .0001) or were physically examined for TD (P < .0001). More undiagnosed versus diagnosed participants reported difficulty doing fine work with fingers (P=.0019). When comparing social determinants of heath, undiagnosed participants reported low income (P=.0001) and employment status (P=.0003) and limited education (P=.0047). Undiagnosed participants reported more sadness (P=.004) and loneliness (P=.01) than diagnosed participants. Treated participants (n=59) versus TD-diagnosed untreated participants (n=97) more commonly met their HCP, who prescribed psychiatric medication within 3-month period (P=.0001) and had continuity of care (P=.02).
Conclusion: Lack of discussion of involuntary movements with the HCP, employment status, and educational level are barriers to TD diagnosis. Ongoing care from the prescribing HCP and increased education about available TD treatments are determinants of receiving treatment after TD diagnosis.
