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. 2024 Jul;65(7):1938-1961.
doi: 10.1111/epi.17976. Epub 2024 May 17.

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  1 , Frieda Sossi  2 , Isabel Miller  2 , Paula Blancarte Jaber  2 , Zofia Das-Gupta  2 , Luz Sousa Fialho  2 , Action Amos  3 , Joan K Austin  4 , Scott Badzik  5 , Gus Baker  6 , Bruria Ben Zeev  7 , Jeffrey Bolton  8 , John E Chaplin  9 , J Helen Cross  10 , Derrick Chan  11 , Christian A Gericke  12 , Aatif M Husain  13 , Lorraine Lally  14 , Sharon Mbugua  15 , Cassidy Megan  16 , Tomás Mesa  17 , Lilia Nuñez  18 , Tim J von Oertzen  19 , Emilio Perucca  20 , Angie Pullen  21 , Gabriel M Ronen  22 , Martha Sajatovic  23 , Mamta B Singh  24 , Jo M Wilmshurst  25 , Leonie Wollscheid  26 , Anne T Berg  27
Affiliations

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 et al. Epilepsia. 2024 Jul.

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.

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