NEW ORLEANS—Researchers have developed a new scale to measure the impacts tardive dyskinesia has on patients and their caregivers, according to a poster abstract presented at Psych Congress 2017.
The research team conducted in-person, qualitative interviews with 22 people with TD and 11 caregivers of people with the movement disorder, across 5 sites. They were asked open-ended questions to solicit information on signs, symptoms, and the impact of TD. They also were given a cognitive debriefing, using the the Tardive Dyskinesia Rating Scale (TDRS) and a thinkaloud method.
The study found that the most common symptoms of TD that adversely affected people with the disorder and their 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 effects of TD, as assessed by people with TD and caregivers, were unwanted attention (90.9% and 45.5%, respectively) and difficulty speaking (72.7% and 45.5%).
Through the cognitive debriefing, researchers determined that the TDRS instructions and most items on that scale were “interpreted as intended” by more than 70% of the people in each group. However, more than 50% had difficulty interpreting the rating scale used for each of the TDRS items.
Using findings from those interviews and guidelines issued by the US Food and Drug Administration, researchers developed a new patient-reported outcome (PRO) measure, the Tardive Dyskinesia Impact Scale.
“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,” the study team wrote. “These more proximal impacts of TD should be included in future PRO instruments for TD patients.”
The poster was sponsored by Neurocrine Biosciences, Inc., makers of valbenazine, a TD therapy.
Farber R, Sparta D, Gauthier M, Witherspoon B, O’Brien C, Evans C. Tardive dyskinesia: patient and caregiver perspectives on signs, symptoms, and impact. Poster presented at Psych Congress 2017; September 16-19, 2017; New Orleans, LA. Poster 229.