Healthcare Responsibility and Transition Readiness in Adolescents with Tourette Syndrome

Objective: This study sought to characterize healthcare responsibility, caregiver involvement, and transition readiness for adolescents with Tourette syndrome (TS). Method: Participants included 38 adolescent-caregiver dyads (adolescent Mage= 14.45, SD= 1.52). T-tests compared caregiver- and adolescent-reports of healthcare responsibility and transition readiness to one another and adolescent transplant recipients. Correlations and regression analyses examined the influence of demographic, medical, adolescent, and family variables on transition readiness. Results: Adolescents and caregivers reported low adolescent healthcare responsibility and transition readiness and high caregiver involvement. Younger adolescent age, comorbid conditions, executive functioning deficits, caregiver depression, and poor family functioning related to lower adolescent responsibility and transition readiness, and higher caregiver involvement. Only behavior regulation accounted for additional variance in transition readiness, beyond medical and family factors. Conclusions: Adolescents with TS do not feel prepared to independently manage their healthcare and transfer to adult-care, likely due to limited training and lack of specialty care clinics.