Call for the use of the ILAE terminology for seizures and epilepsies by health care professionals and regulatory agencies to benefit patients and caregivers

Stéphane Auvin; Alexis Arzimanoglou; Isabella Brambilla; Jacqueline French; Kelly G Knupp; Lieven Lagae; Emilio Perucca; Eugen Trinka; Dennis Dlugos

doi:10.1111/epi.17868

Call for the use of the ILAE terminology for seizures and epilepsies by health care professionals and regulatory agencies to benefit patients and caregivers

Epilepsia. 2024 Feb;65(2):283-286. doi: 10.1111/epi.17868. Epub 2024 Jan 4.

Authors

Stéphane Auvin^{1

2

3}, Alexis Arzimanoglou⁴, Isabella Brambilla⁵, Jacqueline French⁶, Kelly G Knupp^{7

8}, Lieven Lagae⁹, Emilio Perucca^{10

11}, Eugen Trinka^{12

13

14}, Dennis Dlugos^{15

16}

Affiliations

¹ Institut national de la santé et de la recherche médicale (INSERM) NeuroDiderot, Université Paris Cité, Paris, France.
² Pediatric Neurology Department, APHP, CRMR Epilepsies Rares, member of European Reference Network EpiCARE, Robert Debré University Hospital, Paris, France.
³ Institut Universitaire de France, Paris, France.
⁴ Coordinating Member of the European Reference Network EpiCARE, Children's University Hospital San Juan de Dios, Barcelona, Spain.
⁵ Coordinator, EPAG Patient Group, European Reference Network EpiCARE, Dravet Italia Onlus, Verona, Italy.
⁶ Department of Neurology, NYU Grossman School of Medicine, New York, New York, USA.
⁷ Department of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
⁸ Department of Neurology, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
⁹ Member of the European Reference Network EPICARE, Paediatric Neurology Section, Department of Development and Regeneration, University Hospitals KU Leuven, Leuven, Belgium.
¹⁰ Department of Medicine (Austin Health), University of Melbourne, Mebourne, Victoria, Australia.
¹¹ Department of Neuroscience, Central Clinical School, Monash University, Melbourne, Victoria, Australia.
¹² Member of European Reference Network EpiCARE, Department of Neurology, Center for Cognitive Neuroscience, Christian Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria.
¹³ Neuroscience Institute, Center for Cognitive Neuroscience, Christian Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria.
¹⁴ Institute of Public Health, Medical Decision Making and Health Technology Assessment, University for Health Sciences, Medical Informatics, and Technology, Hall in Tyrol, Austria.
¹⁵ Pediatric Epilepsy Program, Division of Neurology, Department of Neurology, Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA.
¹⁶ Pediatric Epilepsy Program, Division of Neurology, Department of Pediatrics, Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA.

PMID: 38105624
DOI: 10.1111/epi.17868

Abstract

The International League Against Epilepsy (ILAE) introduced a classification for seizure types in 2017 and updated the classification for epilepsy syndromes in 2022. These classifications aim to improve communication among healthcare professionals and help patients better describe their condition. So far, regulatory agencies have used different terminology. This paper stresses the crucial need for consistently adopting ILAE terminology in both regulatory processes and clinical practice. It highlights how language plays a significant role in healthcare communication and how standardized terminology can enhance patient comprehension. The ongoing review of guidelines by regulatory bodies offers a timely opportunity. Aligning regulatory terminologies holds the potential to facilitate discussions on future drug development and harmonize practices across diverse regions, ultimately fostering improved care and research outcomes in epilepsy treatment.

Keywords: caregivers; epilepsy; seizure; terminology.

MeSH terms

Caregivers
Epilepsy* / diagnosis
Epileptic Syndromes*
Forecasting
Humans
Seizures / diagnosis

Grants and funding

R01 NS133040/NS/NINDS NIH HHS/United States