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

Authors

Martha Sajatovic, Case Western Reserve UniversityFollow

Author ORCID Identifier

Martha Sajatovic

Document Type

Article

Publication Date

5-13-2024

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

Language

English

Publication Title

Epilepsia

Rights

© The Author(s) 2024. This is an Open Access work distributed under the terms of the Creative Commons Attribution Licence (http://creativecommons.org/licenses/by/4.0/) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.

Recommended Citation

Mitchell JW, Sossi F, Miller I, Jaber PB, Das-Gupta Z, Fialho LS, Amos A, Austin JK, Badzik S, Baker G, Zeev BB, Bolton J, Chaplin JE, Cross JH, Chan D, Gericke CA, Husain AM, Lally L, Mbugua S, Megan C, Mesa T, Nuñez L, von Oertzen TJ, Perucca E, Pullen A, Ronen GM, Sajatovic M, Singh MB, Wilmshurst JM, Wollscheid L, Berg AT. 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. Epilepsia. 2024 Jul;65(7):1916-1937. doi: 10.1111/epi.17971. Epub 2024 May 13. PMID: 38738754.