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.

Journal: Epilepsia

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Affiliated Institutions:  Institute of Systems, Molecular, and Integrative Biology, University of Liverpool, Liverpool, UK. International Consortium for Health Outcomes Measurement, London, UK. International Bureau for Epilepsy, Africa Region, University of Edinburgh, Edinburgh, UK. Indiana University School of Nursing, Indianapolis, Indiana, USA. Lived experience representative, Cincinnati, Ohio, USA. University of Liverpool, Liverpool, UK. Sheba Medical Center, Edmond and Lilly Safra Children's Hospital, Tel Hashomer, Israel. Boston Children's Hospital, Boston, Massachusetts, USA. University of Gothenburg, Gothenburg, Sweden. Developmental Neurosciences Department, University College London Great Ormond Street Institute of Child Health, London, UK. KK Women's and Children's Hospital, Duke-NUS, Singapore, Singapore. University of Queensland Medical School, Brisbane, Queensland, Australia. Duke University Medical Center and Veterans Affairs Medical Center, Durham, North Carolina, USA. LLM (International Human Rights Law), LLM (Financial Services Law), Galway, Ireland. Mental Health Alliance of Kenya, Nairobi, Kenya. Purple Day, Halifax, Nova Scotia, Canada. Pontificia Universidad Católica de Chile, Santiago, Chile. Centro Medico Nacional de Noviembre, Médica Sur, Mexico City, Mexico. Department of Neurology , Kepler University Hospital, Johannes Kepler University, Linz, Austria. Department of Medicine (Austin Health), University of Melbourne, Melbourne, Victoria, Australia. Formerly Epilepsy Action, London, UK. Department of Pediatrics, CanChild Centre for Childhood Disability Research, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada. Departments of Psychiatry and Neurology, University Hospitals Cleveland Medical Center, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA. All Indian Institute of Medicine Sciences, New Delhi, India. Red Cross War Memorial Children's Hospital, Neuroscience Institute, University of Cape Town, Cape Town, South Africa. Epilepsie Empowerment Deutschland, Karlsruhe, Germany. Department of Neurology, Northwestern Feinberg School of Medicine, Chicago, Illinois, USA.

Abstract summary 

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.

Authors & Co-authors:  Mitchell James W JW Sossi Frieda F Miller Isabel I Jaber Paula Blancarte PB Das-Gupta Zofia Z Fialho Luz Sousa LS Amos Action A Austin Joan K JK Badzik Scott S Baker Gus G Ben Zeev Bruria B Bolton Jeffrey J Chaplin John E JE Cross J Helen JH Chan Derrick D Gericke Christian A CA Husain Aatif M AM Lally Lorraine L Mbugua Sharon S Megan Cassidy C Mesa Tomás T Nuñez Lilia L von Oertzen Tim J TJ Perucca Emilio E Pullen Angie A Ronen Gabriel M GM Sajatovic Martha M Singh Mamta B MB Wilmshurst Jo M JM Wollscheid Leonie L Berg Anne T AT

Study Outcome 

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Statistics
Citations :  Guerrini R. Epilepsy in children. Lancet. 2006;367:499–524.
Authors :  31
Identifiers
Doi : 10.1111/epi.17976
SSN : 1528-1167
Study Population
Male,Female
Mesh Terms
Other Terms
epilepsy;outcomes;patient‐reported outcome measures;quality improvement;value‐based health care
Study Design
Study Approach
Country of Study
Publication Country
United States