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Review
. 2024 Jul;65(7):1916-1937.
doi: 10.1111/epi.17971. Epub 2024 May 13.

Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Adults 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
Review

Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Adults 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. Therefore, 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 outcomes measurement methods for clinical practice that support patient-clinician decision-making and quality improvement. Consensus methods identified 20 core outcomes. Measurement tools were recommended based on their evidence of strong clinical measurement properties, feasibility, and cross-cultural applicability. The essential outcomes included many non-seizure outcomes: anxiety, depression, suicidality, memory and attention, sleep quality, functional status, and the social impact of epilepsy. The proposed set will facilitate the implementation of the use of patient-centered outcomes in daily practice, ensuring holistic care. They also encourage harmonization of outcome measurement, and if widely implemented should reduce the heterogeneity of outcome measurement, accelerate comparative research, and facilitate quality improvement efforts.

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

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References

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