To understand patient perspectives on barriers to tardive dyskinesia (TD) diagnosis and treatment.
TD is underdiagnosed, and understanding barriers to diagnosis is an unmet need.
Enrolled participants (n=327) were grouped into three cohorts, based on participant responses: 52% (n=171) had no formal TD diagnosis from a healthcare professional (HCP) (undiagnosed), 30% (n=97) were diagnosed with TD but not treated, and 18% (n=59) were diagnosed and currently/previously treated.
Fewer participants in undiagnosed versus diagnosed cohorts discussed involuntary movements with HCPs (P<.0001) or were physically examined for TD (P<.0001). Participants who discussed involuntary movements with HCPs were more often diagnosed than those who did not (odds ratio, 31.92 [95% CI, 14.73–76.09]; P<0.01). Undiagnosed participants more commonly reported low income (P=.0001) and low levels of employment (P=.0003). Participants were less likely to be diagnosed if they sometimes (0.33 [0.14–0.74]; P=0.01) or often (0.28 [0.11–0.72]; P=0.01) struggled with food/money.
Treated participants reported more common HCP engagement (appointments within the last 3 months) (P=.0001) than TD-diagnosed but untreated participants, and participants who commonly engaged were more likely to receive TD treatment than those who did not (9.01 [3.08–33.79]; P<0.01).
Lack of discussion of TD symptoms with HCPs and low socioeconomic status were barriers to TD diagnosis. Infrequent HCP visits was a barrier to treatment. These results highlight the need for increased patient education and for HCPs to proactively discuss TD symptoms with patients.