Patient Perspectives on Tic-Related Impairment: A Qualitative Examination

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.

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.

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.

Results represent an initial step in identifying, measuring, and addressing patient-centered goals in tic treatment.