To determine the percentage of individuals diagnosed with Tourette syndrome (TS) or chronic tic disorder (CTD) who require intervention and to determine the appropriateness of outside referrals to intervention for TS/CTD.

Tics are normal movements that are considered abnormal given their frequency and context. Approximately 1% of children exhibit features consistent with TS or CTD, conditions defined by tic duration. A 2019 American Academy of Neurology practice parameter recommends education and cognitive behavioral interventions as first-line therapies. However, it is unknown what percentage of diagnosed individuals require intervention.

Data from a single center with two dedicated pediatric movement disorder specialists from 2017-2022 were analyzed to determine the natural history of TS/CTD regarding need for intervention. In this institution, a Cognitive Behavioral Intervention for Tics (CBIT) Clinic has provided first-line therapy for individuals warranting intervention since 2010, additionally receiving outside referrals. Of individuals diagnosed with TS/CTD during this timeframe, the number referred to CBIT was determined. Patients seen in CBIT clinic were compared based on referral source, and appropriateness of candidacy for intervention was determined based on analysis of treatment notes.

Of 752 individuals diagnosed with TS/CTD by movement disorder specialists, only 14.6% warranted intervention and were referred to CBIT. In contrast, outside providers referred three times as many patients, 15% of which were inappropriate candidates for treatment due to referring diagnosis, comorbidity, or patient motivation. Approximately 43% of patients referred by outside providers attended 2 or less treatment visits compared to 23% for those referred by movement disorders specialists.

This is the first description of the likelihood of a child requiring an intervention for tics in a large, established movement disorder practice. This data supports that most pediatric patients with TS/CTD do not require intervention and emphasizes the importance of educating both families and providers regarding diagnosis and treatment indications.