Caregiver Perspectives on the Health Care System for Tic Disorders: Utilization and Barriers.

OBJECTIVE: This study aimed to understand health care experiences among a sample of caregivers of children with TDs to inform future directions for improving the health care system. METHODS: We conducted a survey of caregivers of youth with TDs and used descriptive statistics and quantitative analyses to characterize the health care utilization practices of the sample. RESULTS: The majority (70%) of families first consulted their pediatrician/primary care provider, and caregivers reported receiving care in line with current best practice guidelines. However, caregivers in the current sample perceived a lack of knowledgeability on the part of their first providers, which significantly predicted more providers seen and also reported difficulty finding specialty providers (63% of the sample reported difficulty finding a treatment provider who understood tics). CONCLUSION: Results suggest that improving caregiver satisfaction with early health care experiences for their child's TD may help to relieve the burden on families and the health care system more broadly, along with continued efforts to increase the number of specialty providers available.

Relations Between Tic Severity, Emotion Regulation, and Social Outcomes in Youth with Tourette Syndrome.

This study examined associations between tic severity, emotion regulation, social functioning, and social impairment in youth with Tourette Syndrome (TS). Emotion regulation was examined as a mediator between tic severity and social outcomes. Seventy-seven caregivers of youth with TS (M age = 13.1 years; SD = 2.29) were administered proxy-report measures of tic severity, emotion regulation, social functioning, and social impairment. Total and motor tic severity were negatively associated with emotion regulation and social functioning, and positively associated with social impairment (r's = 0.23 to 0.43). Vocal tic severity was not related to emotion regulation or social functioning, but was positively associated with social impairment (r = 0.36). Emotion regulation mediated the relations between total tic severity and both social outcomes, and motor tic severity and both social outcomes. Interventions that target emotion regulation would likely be a beneficial adjunctive therapy for youth with TS, and may result in improved social outcomes.