Care Delivery for Children With Epilepsy During the COVID-19 Pandemic: An International Survey of Clinicians.

J. Helen Cross,Yuwu Jiang,Anup D. Patel,Kelly G. Knupp,Renée A. Shellhaas,Zachary M. Grinspan,Rima Nabbout,Elaine C. Wirrell,Nicola Specchio,Biju Hammeed,John R. Mytinger

doi:10.1177/0883073820940189

Abstract

Objective:To evaluate the effect of the COVID-19 pandemic on global access to care and practice patterns for children with epilepsy.Methods:We conducted a cross-sectional, online survey of pediatric neurologists across the world affiliated with the International Child Neurology Association, the Chinese Child Neurology Society, the Child Neurology Society, and the Pediatric Epilepsy Research Consortium. Results were analyzed in relation to regional burden of COVID-19 disease.Results:From April 10 to 24, 2020, a sample of 212 respondents from 49 countries indicated that the COVID-19 pandemic has dramatically changed many aspects of pediatric epilepsy care, with 91.5% reporting changes to outpatient care, 90.6% with reduced access to electroencephalography (EEG), 37.4% with altered management of infantile spasms, 92.3% with restrictions in ketogenic diet initiation, 93.4% with closed or severely limited epilepsy monitoring units, and 91.3% with canceled or limited epilepsy surgery. Telehealth use had increased, with 24.7% seeing patients exclusively via telehealth. Changes in practice were related both to COVID-19 burden and location.Conclusions:In response to COVID-19, pediatric epilepsy programs have implemented crisis standards of care that include increased telemedicine, decreased EEG use, changes in treatments of infantile spasms, and cessation of epilepsy surgery. The long-term impact of these abrupt changes merit careful study.

Highlights

We developed and administered an English-language online survey to test the hypothesis that the COVID-19 pandemic has changed healthcare delivery to children with epilepsy, as well as to describe these changes
From April 10 to 24, 2020, there were 212 survey respondents, 147 through ICNApedia, and 65 through the Survey Monkey website sent to Pediatric Epilepsy Research Consortium (PERC) and Child Neurology Society (CNS) members
The questions on dietary therapies were only included in the survey sent to PERC and CNS as most US institutions initiate the ketogenic diet with an admission to the hospital in contrast to some other regions of the world

Summary

Methods

Study designWe conducted a cross-sectional, online survey of world pediatric neurologists. The sampling frame included members of the International Child Neurology Association (ICNA), the Chinese Child Neurology Society, the Pediatric Epilepsy Research Consortium (PERC), and the Child Neurology Society (CNS). We aimed to assess the experience from a variety of centers, countries, and regions, rather than to account for the practices of all individual members. We expected some countries would have few individual respondents because of the small numbers of pediatric neurologists in some parts of the world. Analyses were performed using SPSS, version 26.0 (IBM, Armonk, NY), and R, version 4.0.12 To compare categorical variables, we used the chi-square test. To assess for an association between practice (multinomial) and COVID-19 burden (ordinal), we used a modified Cochrane-Armitage Test.[13] P values less than .05 were considered statistically significant

Results

Discussion

Conclusion