Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Adults with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations

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Abstract

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. Therefore, the International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy and their representatives to develop minimum sets of standardized outcomes and outcomes measurement methods for clinical practice that support patient–clinician decision‐making and quality improvement. Consensus methods identified 20 core outcomes. Measurement tools were recommended based on their evidence of strong clinical measurement properties, feasibility, and cross‐cultural applicability. The essential outcomes included many non‐seizure outcomes: anxiety, depression, suicidality, memory and attention, sleep quality, functional status, and the social impact of epilepsy. The proposed set will facilitate the implementation of the use of patient‐centered outcomes in daily practice, ensuring holistic care. They also encourage harmonization of outcome measurement, and if widely implemented should reduce the heterogeneity of outcome measurement, accelerate comparative research, and facilitate quality improvement efforts.

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Ingrid Scheffer, Samuel Berkovic, Giuseppe Capovilla … (2017)

The International League Against Epilepsy (ILAE) Classification of the Epilepsies has been updated to reflect our gain in understanding of the epilepsies and their underlying mechanisms following the major scientific advances that have taken place since the last ratified classification in 1989. As a critical tool for the practicing clinician, epilepsy classification must be relevant and dynamic to changes in thinking, yet robust and translatable to all areas of the globe. Its primary purpose is for diagnosis of patients, but it is also critical for epilepsy research, development of antiepileptic therapies, and communication around the world. The new classification originates from a draft document submitted for public comments in 2013, which was revised to incorporate extensive feedback from the international epilepsy community over several rounds of consultation. It presents three levels, starting with seizure type, where it assumes that the patient is having epileptic seizures as defined by the new 2017 ILAE Seizure Classification. After diagnosis of the seizure type, the next step is diagnosis of epilepsy type, including focal epilepsy, generalized epilepsy, combined generalized, and focal epilepsy, and also an unknown epilepsy group. The third level is that of epilepsy syndrome, where a specific syndromic diagnosis can be made. The new classification incorporates etiology along each stage, emphasizing the need to consider etiology at each step of diagnosis, as it often carries significant treatment implications. Etiology is broken into six subgroups, selected because of their potential therapeutic consequences. New terminology is introduced such as developmental and epileptic encephalopathy. The term benign is replaced by the terms self-limited and pharmacoresponsive, to be used where appropriate. It is hoped that this new framework will assist in improving epilepsy care and research in the 21st century.

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Epilepsy was defined conceptually in 2005 as a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures. This definition is usually practically applied as having two unprovoked seizures >24 h apart. The International League Against Epilepsy (ILAE) accepted recommendations of a task force altering the practical definition for special circumstances that do not meet the two unprovoked seizures criteria. The task force proposed that epilepsy be considered to be a disease of the brain defined by any of the following conditions: (1) At least two unprovoked (or reflex) seizures occurring >24 h apart; (2) one unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years; (3) diagnosis of an epilepsy syndrome. Epilepsy is considered to be resolved for individuals who either had an age-dependent epilepsy syndrome but are now past the applicable age or who have remained seizure-free for the last 10 years and off antiseizure medicines for at least the last 5 years. "Resolved" is not necessarily identical to the conventional view of "remission or "cure." Different practical definitions may be formed and used for various specific purposes. This revised definition of epilepsy brings the term in concordance with common use. A PowerPoint slide summarizing this article is available for download in the Supporting Information section here. Wiley Periodicals, Inc. © 2014 International League Against Epilepsy.

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Author and article information

Contributors

James W. Mitchell: (View ORCID Profile)

J. Helen Cross: (View ORCID Profile)

Tim J. von Oertzen: (View ORCID Profile)

Emilio Perucca: (View ORCID Profile)

Martha Sajatovic: (View ORCID Profile)

Mamta B. Singh: (View ORCID Profile)

Jo M. Wilmshurst: (View ORCID Profile)

Anne T. Berg: (View ORCID Profile)

Journal

Title: Epilepsia

Abbreviated Title: Epilepsia

Publisher: Wiley

ISSN (Print): 0013-9580

ISSN (Electronic): 1528-1167

Publication date Created: July 2024

Publication date (Electronic): May 13 2024

Publication date (Print): July 2024

Volume: 65

Issue: 7

Pages: 1916-1937

Affiliations

[1 ] Institute of Systems, Molecular and Integrative Biology (ISMIB) University of Liverpool Liverpool UK

[2 ] International Consortium for Health Outcomes Measurement London UK

[3 ] International Bureau for Epilepsy, Africa Region, University of Edinburgh Edinburgh UK

[4 ] Indiana University School of Nursing Indianapolis Indiana USA

[5 ] Lived Experience Representative Cincinnati Ohio USA

[6 ] University of Liverpool Liverpool UK

[7 ] The Edmond and Lilly Safra Children's Hospital, Sheba Medical Center Tel Hashomer Israel

[8 ] Boston Children's Hospital Boston Massachusetts USA

[9 ] University of Gothenburg Gothenburg Sweden

[10 ] Developmental Neurosciences Dept UCL Great Ormond Street Institute of Child Health London UK

[11 ] KK Women's and Children's Hospital Duke‐NUS Singapore

[12 ] The University of Queensland Medical School Brisbane Queensland Australia

[13 ] Duke University Medical Center and Veterans Affairs Medical Center Durham North Carolina USA

[14 ] LLM (International Human Rights Law), LLM (Financial Services Law) Galway Ireland

[15 ] Mental Health Alliance of Kenya Kenya

[16 ] Founder of Purple Day Halifax Nova Scotia Canada

[17 ] Pontificia Universidad Católica de Chile Santiago Chile

[18 ] Centro Medico Nacional 20 de Noviembre, Médica Sur Mexico City Mexico

[19 ] Department of Neurology 1 Kepler University Hospital, Johannes Kepler University Linz Austria

[20 ] Department of Medicine (Austin Health) The University of Melbourne Melbourne Victoria Australia

[21 ] Formerly Epilepsy Action London UK

[22 ] Department of Pediatrics, CanChild Centre for Childhood Disability Research, Faculty of Health Sciences McMaster University Hamilton Ontario Canada

[23 ] Departments of Psychiatry and of Neurology University Hospitals Cleveland Medical Center, Case Western Reserve University School of Medicine Cleveland Ohio USA

[24 ] All Indian Institute of Medicine Sciences New Delhi India

[25 ] Red Cross War Memorial Children's Hospital Neuroscience Institute, University of Cape Town Cape Town South Africa

[26 ] Epilepsie Empowerment Deutschland e.V Karlsruhe Germany

[27 ] Department of Neurology Northwestern Feinberg School of Medicine Chicago Illinois USA

Article

DOI: 10.1111/epi.17971

PubMed ID: 38738754

SO-VID: b72161d7-d1d6-4fcc-af96-b681ade0c82d

License:

http://creativecommons.org/licenses/by/4.0/

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