Task Force on Reports and Position Statements: Edward Bertram (Chair), Giuliano, Avanzini, Fernando Cendes, Sheryl Haut, Sunao Kaneko, Shi Hui Lim, Gary Mathern, Cigdem Ozkara, Ingrid Scheffer, Philip Schwartzkroin, and Michele Simonato.
Introduction to the Clinical Definition of Epilepsy by the ILAE President
Article first published online: 14 APR 2014
Wiley Periodicals, Inc. © 2014 International League Against Epilepsy
Volume 55, Issue 4, pages 473–474, April 2014
How to Cite
Perucca, E. (2014), Introduction to the Clinical Definition of Epilepsy by the ILAE President. Epilepsia, 55: 473–474. doi: 10.1111/epi.12584
- Issue published online: 22 APR 2014
- Article first published online: 14 APR 2014
This issue of Epilepsia contains a landmark paper addressing a topic central to our discipline: “What is epilepsy?” Dr. Fisher et al. from the International League Against Epilepsy (ILAE) Task Force on the Practical Clinical Definition of Epilepsy provide a consensus-driven answer by building on the 2005 conceptual definition. The 2005 document defined epilepsy as an enduring predisposition to generate epileptic seizures and by the neurobiologic, cognitive, psychological, and social consequences of this condition. Although the 2005 document indicated that the definition of epilepsy requires the occurrence of at least one epileptic seizure, it did not provide guidance on how enduring predisposition should be defined, particularly for people presenting with a single unprovoked seizure, in situations where many of us recognized that “this person has epilepsy.” This uncertainty generated considerable debate and criticism within the epilepsy community. The article by Fisher et al. published in this issue takes the conceptual definition into an operational dimension and provides clinical criteria that physicians can apply in everyday practice. The article includes other new concepts, such as the recognition of reflex seizures as a type of epilepsy despite the absence of unprovoked seizures, and the notion that a diagnosis of epilepsy is not for life, that the disease can be considered “resolved.”
The publication of an operational definition of epilepsy is a milestone for the epilepsy community as it represents a new direction in the creation of such a consensus document. This document in fact will carry the designation of “League position” using a new process. This means that the definition is endorsed by our organization, its membership, and the international epilepsy community.
The ILAE received feedback some years ago that the process of adapting new organizational systems and definitions was not transparent, and consequently not readily accepted by the community. It was clear that we needed a more inclusive approach. Dr. Solomon Moshé appointed a special Task Force, chaired by Dr. Ed Bertram, which was charged with making recommendations on how the League should review and approve documents produced by our Commissions and Task Forces. The recommendations finalized with constructive advice from Past ILAE Presidents and approved by the Executive Committee in 2013, have come to define two different categories of ILAE publications. The first are documents such as topic papers and reports from consensus meetings, which are acknowledged as coming from the League but which do not necessarily represent ILAE policy. The second are more official documents that are intended to represent the position of the League in matters such as the organization of the epilepsies and definitions for the international epilepsy community. For the first category it is considered sufficient to have approval of the ILAE Executive Committee for concept (not necessarily for content) and acceptance through Epilepsia's peer-review process. For the second category, more official documents, there is agreement that there should be greater transparency and that the documents should be available for public comment for our community worldwide. Specifically, following preliminary approval for concept and content by the ILAE Executive Committee, proposed position papers need to be submitted to Epilepsia for peer review and simultaneously made openly accessible online for a period of 2 months, with public comments being actively solicited from the international epilepsy community. This approach also provides an opportunity to identify potential cultural and language issues of which the authors of the draft may be unaware. Once all the comments are received, they are reviewed by an ad hoc expert panel composed of some of the original authors and new members who are charged with addressing and incorporating the public comments.
Although the process looked good in concept, it was unclear if it would work in practice, and the Practical Clinical Definition document was the first test. So, when the paper underwent this new process, many of us could not disguise our anxiety. The response to the call for public comments was extremely gratifying. More than 300 public comments were received with a truly international distribution from all ILAE regions, and the quality of the comments in terms of insight and perspectives exceeded our most generous expectations. It was a true community involvement.
The final step, and perhaps the most difficult, was the incorporation of the comments from both the public and blinded peer-review into the document that is now before you. As you can imagine, some of the comments conflicted with others. All of us recognize the work that it takes to bring a relatively small group of academicians to an agreement. Summarizing comments from >300 experts and deciding how to bring them into the original paper was a herculean effort. Dr. Fisher showed extraordinary leadership in coordinating the production of the original document and in bringing consensus to the final definition paper. Prolonged discussions and difficult decisions and compromises were made, taking into consideration the suggestions and criticism from the community. To help you understand the issues that his task force faced, Dr. Fisher has written a companion article outlining the process of how he reached consensus.
I want to thank Dr. Bertram and all the members of his Task Force1 for finalizing the approval process for the League's documents. I congratulate Dr. Fisher and his team for their relentless work over the last 2 years in creating our new practical clinical definition of epilepsy. Even more, I would like to thank all of you in our international community for contributing to the final version. We have something that was developed by our entire community, and I feel very proud of that.
Except for being the current President of the ILAE and a coauthor of the practical clinical definition paper, I have no conflicts of interest to disclose in relation to this editorial. I confirm that I have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.