TY - JOUR
T1 - Care Delivery for Children With Epilepsy During the COVID-19 Pandemic
T2 - An International Survey of Clinicians
AU - Wirrell, Elaine C.
AU - Grinspan, Zachary M.
AU - Knupp, Kelly G.
AU - Jiang, Yuwu
AU - Hammeed, Biju
AU - Mytinger, John R.
AU - Patel, Anup D.
AU - Nabbout, Rima
AU - Specchio, Nicola
AU - Cross, J. Helen
AU - Shellhaas, Renée A.
N1 - Funding Information:
BH’s research is supported by SPARKS charity and has no other relevant disclosures.
Funding Information:
KGK has received research funds from the Pediatric Epilepsy Research Foundation, West Therapeutics, and Zogenix pharmaceuticals. She serves as an associate editor for Epilepsy Research. She has received consulting fees from Zogenix, Biomarin, GW Pharmaceuticals, and Biocodex.
Funding Information:
We thank colleagues in the International Child Neurology Association (ICNA), the Child Neurology Society (CNS), the Chinese Child Neurology Society (CCNS), and the Pediatric Epilepsy Research Consortium (PERC) for contributing data to this study. The authors received no financial support for the research, authorship, and/or publication of this article.
Funding Information:
JHC has acted as an investigator for studies with GW Pharma, Zogenix, Vitaflo and Marinius. She has been a speaker and on advisory boards for GW Pharma, Zogenix, and Nutricia; all remuneration has been paid to her department. Her research is supported by the National Institute of Health Research (NIHR) Biomedical Research Centre at Great Ormond Street Hospital, NIHR, EPSRC, GOSH Charity, ERUK, the Waterloo Foundation.
Funding Information:
RN has received research grants from EU (Horizons2020, FP7), UCB, Eisai, Livanova and GW Pharmaceuticals, and has served as a consultant/advisor for Novartis, Takeda, Zogenix, Nutricia, Advicenne, Lundbeck, UCB, Eisai, and GW Pharmaceuticals.
Funding Information:
ZMG research is supported by the Pediatric Epilepsy Research Foundation, the Alan and Morris Schapiro Fund, the Orphan Disease Center, Clara Inspired, and Weill Cornell Medicine. He receives consulting fees from Bio-Pharm Solutions Co, Ltd (South Korea).
Funding Information:
ADP’s research is supported by NIH and the Pediatric Epilepsy Research Foundation. He receives royalties from Medscape and Neurology Live for webinar development.
Funding Information:
YJ’s research is supported by National Natural Science Foundation of China and National Key Research Project from Ministry of Science and Technology of China. He serves as an associate editor for Epilepsia Open.
Publisher Copyright:
© The Author(s) 2020.
PY - 2020/11/1
Y1 - 2020/11/1
N2 - 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.
AB - 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.
KW - epilepsy
KW - epilepsy surgery
KW - infantile spasms
KW - telemedicine
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U2 - 10.1177/0883073820940189
DO - 10.1177/0883073820940189
M3 - Article
C2 - 32666891
AN - SCOPUS:85087970998
VL - 35
SP - 924
EP - 933
JO - Journal of Child Neurology
JF - Journal of Child Neurology
SN - 0883-0738
IS - 13
ER -