Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Infants, Children, and Adolescents with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations.

epilepsy outcomes patient‐reported outcome measures quality improvement value‐based health care

Journal

Epilepsia
ISSN: 1528-1167
Titre abrégé: Epilepsia
Pays: United States
ID NLM: 2983306R

Informations de publication

Date de publication:
17 May 2024
Historique:
revised: 24 03 2024
received: 05 10 2023
accepted: 25 03 2024
medline: 17 5 2024
pubmed: 17 5 2024
entrez: 17 5 2024
Statut: aheadofprint

Résumé

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. 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 outcome measurement methods for clinical practice. Using modified Delphi consensus methods with consecutive rounds of online voting over 12 months, a core set of outcomes and corresponding measurement tool packages to capture the outcomes were identified for infants, children, and adolescents with epilepsy. Consensus methods identified 20 core outcomes. In addition to the outcomes identified for the ICHOM Epilepsy adult standard set, behavioral, motor, and cognitive/language development outcomes were voted as essential for all infants and children with epilepsy. The proposed set of outcomes and measurement methods will facilitate the implementation of the use of patient-centered outcomes in daily practice.

Identifiants

pubmed: 38758635
doi: 10.1111/epi.17976
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Subventions

Organisme : International Consortium for Health Outcomes Measurement

Informations de copyright

© 2024 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.

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Auteurs

James W Mitchell (JW)

Institute of Systems, Molecular, and Integrative Biology, University of Liverpool, Liverpool, UK.

Frieda Sossi (F)

International Consortium for Health Outcomes Measurement, London, UK.

Isabel Miller (I)

International Consortium for Health Outcomes Measurement, London, UK.

Paula Blancarte Jaber (PB)

International Consortium for Health Outcomes Measurement, London, UK.

Zofia Das-Gupta (Z)

International Consortium for Health Outcomes Measurement, London, UK.

Luz Sousa Fialho (LS)

International Consortium for Health Outcomes Measurement, London, UK.

Action Amos (A)

International Bureau for Epilepsy, Africa Region, University of Edinburgh, Edinburgh, UK.

Joan K Austin (JK)

Indiana University School of Nursing, Indianapolis, Indiana, USA.

Scott Badzik (S)

Lived experience representative, Cincinnati, Ohio, USA.

Gus Baker (G)

University of Liverpool, Liverpool, UK.

Bruria Ben Zeev (B)

Sheba Medical Center, Edmond and Lilly Safra Children's Hospital, Tel Hashomer, Israel.

Jeffrey Bolton (J)

Boston Children's Hospital, Boston, Massachusetts, USA.

John E Chaplin (JE)

University of Gothenburg, Gothenburg, Sweden.

J Helen Cross (JH)

Developmental Neurosciences Department, University College London Great Ormond Street Institute of Child Health, London, UK.

Derrick Chan (D)

KK Women's and Children's Hospital, Duke-NUS, Singapore, Singapore.

Christian A Gericke (CA)

University of Queensland Medical School, Brisbane, Queensland, Australia.

Aatif M Husain (AM)

Duke University Medical Center and Veterans Affairs Medical Center, Durham, North Carolina, USA.

Lorraine Lally (L)

LLM (International Human Rights Law), LLM (Financial Services Law), Galway, Ireland.

Sharon Mbugua (S)

Mental Health Alliance of Kenya, Nairobi, Kenya.

Cassidy Megan (C)

Purple Day, Halifax, Nova Scotia, Canada.

Tomás Mesa (T)

Pontificia Universidad Católica de Chile, Santiago, Chile.

Lilia Nuñez (L)

Centro Medico Nacional 20 de Noviembre, Médica Sur, Mexico City, Mexico.

Tim J von Oertzen (TJ)

Department of Neurology 1, Kepler University Hospital, Johannes Kepler University, Linz, Austria.

Emilio Perucca (E)

Department of Medicine (Austin Health), University of Melbourne, Melbourne, Victoria, Australia.

Angie Pullen (A)

Formerly Epilepsy Action, London, UK.

Gabriel M Ronen (GM)

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

Martha Sajatovic (M)

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

Mamta B Singh (MB)

All Indian Institute of Medicine Sciences, New Delhi, India.

Jo M Wilmshurst (JM)

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

Leonie Wollscheid (L)

Epilepsie Empowerment Deutschland, Karlsruhe, Germany.

Anne T Berg (AT)

Department of Neurology, Northwestern Feinberg School of Medicine, Chicago, Illinois, USA.

Classifications MeSH