A Descriptive Study of the Caregiver’s Experience of Managing Care for Children and Adolescents With Attention-Deficit/ Hyperactivity Disorder During the COVID-19 Pandemic: The UNCOVER Study

Abstract

Objective: To assess the perceived impact of the COVID-19 pandemic on treatment and quality of life for children and adolescents in the United States who have attention-deficit/ hyperactivity disorder (ADHD). Methods: An online survey of members of PatientsLikeMe was conducted via the health-tracking platform between March 10 and April 2, 2021. Participants were adult caregivers of dependents aged 6−18 years with diagnosed ADHD and who were taking or not taking prescription medication for ADHD. Results: The study enrolled 37 adult caregivers of 37 children/adolescents;36 caregivers responded to treatment questions for children/adolescents. Twenty were caregivers to dependents currently being treated for ADHD. Compared with before the pandemic, there was a decrease in the percentage of children/adolescents using prescription ADHD medication from 65% to 54% during the pandemic. At least 1 switch in ADHD medication and a dosage change were reported by 5 and 8 caregivers, respectively. Seven caregivers reported their dependents had had difficulty adhering to their medication regimen during the pandemic, which caregivers ascribed to a lack of a structured routine. Telehealth visits for their dependents were reported by 13 caregivers. None of the caregivers of dependents taking ADHD medication reported a major impact of the pandemic on ADHD-related medical care. Irrespective of treatment status, 17 caregivers reported that their dependents had ADHD management goals and agreed that the pandemic had a negative impact on progress toward those goals. Conclusions: Many caregivers of children/adolescents with ADHD found it challenging to manage their dependents’ symptoms and treatment during the pandemic.