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

James W Mitchell; Frieda Sossi; Isabel Miller; Paula Blancarte Jaber; Zofia Das-Gupta; Luz Sousa Fialho; Action Amos; Joan K Austin; Scott Badzik; Gus Baker; Bruria Ben Zeev; Jeffrey Bolton; John E Chaplin; J Helen Cross; Derrick Chan; Christian A Gericke; Aatif M Husain; Lorraine Lally; Sharon Mbugua; Cassidy Megan; Tomás Mesa; Lilia Nuñez; Tim J von Oertzen; Emilio Perucca; Angie Pullen; Gabriel M Ronen; Martha Sajatovic; Mamta B Singh; Jo M Wilmshurst; Leonie Wollscheid; Anne T Berg

doi:10.1111/epi.17976

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

Epilepsia. 2024 May 17. doi: 10.1111/epi.17976. Online ahead of print.

Authors

James W Mitchell¹, Frieda Sossi², Isabel Miller², Paula Blancarte Jaber², Zofia Das-Gupta², Luz Sousa Fialho², Action Amos³, Joan K Austin⁴, Scott Badzik⁵, Gus Baker⁶, Bruria Ben Zeev⁷, Jeffrey Bolton⁸, John E Chaplin⁹, J Helen Cross¹⁰, Derrick Chan¹¹, Christian A Gericke¹², Aatif M Husain¹³, Lorraine Lally¹⁴, Sharon Mbugua¹⁵, Cassidy Megan¹⁶, Tomás Mesa¹⁷, Lilia Nuñez¹⁸, Tim J von Oertzen¹⁹, Emilio Perucca²⁰, Angie Pullen²¹, Gabriel M Ronen²², Martha Sajatovic²³, Mamta B Singh²⁴, Jo M Wilmshurst²⁵, Leonie Wollscheid²⁶, Anne T Berg²⁷

Affiliations

¹ Institute of Systems, Molecular, and Integrative Biology, 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 Sheba Medical Center, Edmond and Lilly Safra Children's Hospital, Tel Hashomer, Israel.
⁸ Boston Children's Hospital, Boston, Massachusetts, USA.
⁹ University of Gothenburg, Gothenburg, Sweden.
¹⁰ Developmental Neurosciences Department, University College London Great Ormond Street Institute of Child Health, London, UK.
¹¹ KK Women's and Children's Hospital, Duke-NUS, Singapore, Singapore.
¹² 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, Nairobi, Kenya.
¹⁶ 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), 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 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, Karlsruhe, Germany.
²⁷ Department of Neurology, Northwestern Feinberg School of Medicine, Chicago, Illinois, USA.

PMID: 38758635
DOI: 10.1111/epi.17976

Abstract

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.

Keywords: epilepsy; outcomes; patient‐reported outcome measures; quality improvement; value‐based health care.

Grants and funding

International Consortium for Health Outcomes Measurement