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