5.13 The Experience of Children and Adolescents With ADHD and Their Caregivers During the COVID-19 Pandemic: The UNCOVER Study

The challenges of the COVID-19 pandemic on patients (pts) with mental health disorders are complex and not fully understood. This study surveyed parents/guardians of pediatric pts with ADHD in the United States to better understand the impact of the pandemic on their disorder and quality of life. A 39-question cross-sectional survey was conducted (March 10, 2021 to April 2, 2021) via the PatientsLikeMe (PLM) health tracking platform within an online social network. Participants were US-resident PLM members who were caregivers of dependents aged 6 to 18 years with ADHD. Data related to the impact on treatment, medical care access, symptoms, and ADHD management goals are reported. The cohort comprised 37 adult caregivers. Twenty children were currently taking prescription medication (Rx) for ADHD (treated-pts), and 16 were not (untreated-pts). An 11% decrease in Rx use status was reported during the pandemic. In treated-pts, 25% had ≥1 switch in ADHD Rx type and 40% had an Rx dosage change. Compared to before the pandemic, 37% of the caregivers of treated-pts reported difficulty in adhering to ADHD Rx use as prescribed. Of the 79% of caregivers of treated-pts who reported a pandemic-related negative impact on their daily ADHD Rx routine, 67% reported interference in their structured routine and 53% reported changes in their virtual learning environment as the main reasons. Regarding telehealth and medical care access, 38% of caregivers reported having ≥1 telehealth visit (24% treated-pts vs 15% untreated-pts); 27% of caregivers reported not wanting to use telehealth. On a 4-point scale (none, minor, moderate, major), caregivers of untreated-pts reported a major impact of the pandemic on ADHD-related medical care (12%, vs treated-pts, 0%; p = 0.04). Caregivers of treated-pts were more likely to agree that ADHD symptoms were well managed during the pandemic (21%, vs untreated-pts, 6%). Regardless of treatment status, 53% of dependents had an ADHD management goal; of those, all reported a negative impact of the pandemic on their goal. Compared with the prepandemic period, children/adolescents with ADHD experienced a higher disease burden that translated into a negative impact on their lives and that of their caregivers. The effect of the COVID-19 pandemic appears to have been more pronounced in pts not treated with ADHD medications during this period.