Tardive Dyskinesia: Patient and Caregiver Perspectives on Signs, Symptoms, and Impact

This poster was presented at the 30th annual  Psych Congress, held Sept. 16-19, 2017, in New Orleans, Louisiana.

Background: More research is needed to understand which tardive dyskinesia (TD) signs, symptoms and impacts are most relevant/important to patients. Concept elicitation interviewing techniques were utilized with patients and caregivers to elicit the TD experience, and cognitive interviewing techniques were utilized to test a patient-reported outcome (PRO) measure using FDA guidelines.

Methods: In-person, qualitative interviews were conducted with 22 TD subjects and 11 caregivers (5 sites). For concept elicitation, subjects/caregivers were asked open-ended questions to encourage spontaneous reports of signs, symptoms, and impacts of TD. For cognitive debriefing, the Tardive Dyskinesia Rating Scale (TDRS) was debriefed with subjects/caregivers using a think-aloud method.

Results: The 3 most common TD signs/symptoms that negatively affected TD subjects and caregivers were tongue movements (68.2% and 45.5%, respectively), jaw movements (59.1% and 54.5%), and leg movements (59.1% and 45.5%). The most common negative effects (impacts) for both subjects and caregivers were unwanted attention (90.9% and 45.5%, respectively) and difficulty speaking (72.7% and 45.5%). Cognitive debriefing showed that TDRS instructions and most of the TDRS items were "interpreted as intended" by >70% of both groups. However, >50% had difficulty interpreting the rating scale used for each TDRS item. Results of these interviews informed the development of a new PRO, the Tardive Dyskinesia Impact Scale.

Conclusions: TD has substantial functional and social impacts on patients and caregivers. The social and emotional domains were of particular interest for understanding TD patient burden. These more proximal impacts of TD should be included in future PRO instruments for TD patients.