Impact of COVID-19 pandemic on pediatric patients with epilepsy - The caregiver perspective

Abstract

The recent COVID-19 pandemic has disrupted care systems around the world. We assessed how the COVID-19 pandemic affected children with epilepsy in Italy, where lockdown measures were applied from March 8 to May 4, 2020. We compiled an Italian-language online survey on changes to healthcare and views on telehealth. Invitations were sent to 6631 contacts of all patients diagnosed with epilepsy within the last 5 years at the BambinoGesù Children's Hospital in Rome. Of the 3321 responses received, 55.6% of patients were seizure-free for at least 1 year before the COVID-19-related lockdown, 74.4% used anti-seizure medications (ASMs), and 59.7% had intellectual disability. Only 10 patients (0.4%) became infected with Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2). Seizure frequency remained stable for most patients during the lockdown period (increased in 13.2%; decreased in 20.3%), and seizure duration, use of rescue medications, and adherence to treatment were unchanged. Comorbidities were more affected (behavioral problems worsened in 35.8%; sleep disorder worsened in 17.0%). Visits were canceled/postponed for 41.0%, but 25.1% had remote consultation during the lockdown period (93.9% were satisfied). Most responders (67.2%) considered continued remote consultations advantageous. Our responses support that patients/caregivers are willing to embrace telemedicine for some scenarios.

Keywords: COVID-19; Lockdown; Pediatric epilepsy; Remote consultation; Telehealth; Telemedicine.

Fig. 1

Responder-perceived advantages and disadvantages of telemedicine for the care of epilepsy beyond the COVID-19 pandemic. 1443 patients answered about advantages: the major was to avoid journey, followed by the chance to perform exams nearby and discuss them in telemedicine, and money saving. 2016 patients answered about disadvantages: the major was the lack of multidisciplinary approach, followed by problem with patient-physician communication. 16% considered this mean of communication inadequate to the purpose and 9% had problems with internet connection.