Caregiver Survey of the Burden of Disease in Children and Adolescents With Attention-Deficit/Hyperactivity Disorder

Background: Children and adolescents with attention-deficit/hyperactivity disorder (ADHD) face significant disease burden. We evaluated disease burden in children/adolescents with ADHD and their caregivers from the caregiver’s perspective.

Methods: A cross-sectional online survey was conducted among caregivers of children/adolescents (aged 6–17 years) with ADHD currently treated with stimulants. Survey questions assessed ADHD burden on daily activities and relationships. Data were assessed in all respondents, by the child’s/adolescent’s medication (short-acting stimulant monotherapy, long-acting stimulant monotherapy, augmentation) and by age (6–11 years, 12–14 years, 15–17 years). Data were analyzed using 2-sample t tests (continuous variables) or chi-square tests (categorical variables).

Results: High ADHD burden on their children’s/adolescents’ daily activities was reported by 43.3% of caregivers. A significantly greater percentage of caregivers reported high ADHD burden during the school week than during school-year weekends (47.2% vs 29.1%; P<0.05). Across the day, the greatest percentage of caregivers reported high ADHD burden during afterschool activities/afternoon homework (45.4%), which corresponded to when 39.4% of caregivers reported that ADHD medication started to wear off. The greatest percentage of caregivers reported high ADHD burden on relationships with teachers (35.0%), friends/classmates (34.7%), siblings (33.9%), and parents/primary caregivers (33.0%). Caregivers reported being most burdened by their children’s/adolescents’ ADHD regarding feeling overwhelmed/exhausted and stressed (47.0% and 45.7% of respondents, respectively).

Conclusions: Caregivers perceived high ADHD burden in their children/adolescents with ADHD despite stimulant medication use. These findings support the need for improved ADHD management, especially during later parts of the day when medication effects are waning.