Patient Perspectives on Tic-Related Impairment

Background and Objectives – Historically, researchers and clinicians have assumed that patients engage and initiate treatment for Tourette syndrome to reduce tic severity. As a result, current gold-standard assessment methods and intervention studies focus on global tic reduction. However, initial community-engaged work suggests that patients seek tic treatment for reasons beyond symptom reduction (e.g., impairment), and a host of previous research has shown an inconclusive relationship between tic severity and impairment. The aim of this study was to qualitatively examine patient-reported tic-related impairment using an open-ended prompt exploring the ways that tics get in the way or make life hard. Methods – Data were collected from 2 treatment trials examining various methods of delivering Comprehensive Behavioral Intervention for Tics. In total, 69 participants aged 8–57 years were included in this study. Responses to prompts were coded using an inductive, iterative approach by 3 researchers with expertise in tic disorders. Results – Six major themes (social interference, task interference, physical experiences, tic-related emotional distress, activity restriction, and sleep interference/fatigue) and 14 minor themes were extracted from the data. Discussion – Results represent an initial step in identifying, measuring, and addressing patient-centered goals in tic treatment.