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

Abstract

Abstract: Tic disorders (TDs) can cause considerable functional impairment and are often associated with comorbid conditions, resulting in difficulty managing symptoms. Although several effective evidence-based interventions are available, previous research has found that caregivers of children with TDs often experience substantial burden navigating the health care system to address their child's tics. 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.