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-Reference-Cited by-同舟云学术

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

Published:2024-05-17 Issue:7 Volume:65 Page:1938-1961
ISSN:0013-9580
Container-title:Epilepsia
language:en
Short-container-title:Epilepsia

Author:

Mitchell James W.¹^ORCID,Sossi Frieda²,Miller Isabel²,Jaber Paula Blancarte²,Das‐Gupta Zofia²,Fialho Luz Sousa²,Amos Action³,Austin Joan K.⁴,Badzik Scott⁵,Baker Gus⁶,Ben Zeev Bruria⁷,Bolton Jeffrey⁸,Chaplin John E.⁹,Cross J. Helen¹⁰^ORCID,Chan Derrick¹¹,Gericke Christian A.¹²,Husain Aatif M.¹³,Lally Lorraine¹⁴,Mbugua Sharon¹⁵,Megan Cassidy¹⁶,Mesa Tomás¹⁷,Nuñez Lilia¹⁸,von Oertzen Tim J.¹⁹^ORCID,Perucca Emilio²⁰^ORCID,Pullen Angie²¹,Ronen Gabriel M.²²,Sajatovic Martha²³^ORCID,Singh Mamta B.²⁴^ORCID,Wilmshurst Jo M.²⁵^ORCID,Wollscheid Leonie²⁶,Berg Anne T.²⁷^ORCID

Affiliation:

1. Institute of Systems, Molecular, and Integrative Biology University of Liverpool Liverpool UK

2. International Consortium for Health Outcomes Measurement London UK

3. International Bureau for Epilepsy, Africa Region, University of Edinburgh Edinburgh UK

4. Indiana University School of Nursing Indianapolis Indiana USA

5. Lived experience representative Cincinnati Ohio USA

6. University of Liverpool Liverpool UK

7. Sheba Medical Center Edmond and Lilly Safra Children's Hospital Tel Hashomer Israel

8. Boston Children's Hospital Boston Massachusetts USA

9. University of Gothenburg Gothenburg Sweden

10. Developmental Neurosciences Department University College London Great Ormond Street Institute of Child Health London UK

11. KK Women's and Children's Hospital Duke–NUS Singapore Singapore

12. University of Queensland Medical School Brisbane Queensland Australia

13. Duke University Medical Center and Veterans Affairs Medical Center Durham North Carolina USA

14. LLM (International Human Rights Law), LLM (Financial Services Law) Galway Ireland

15. Mental Health Alliance of Kenya Nairobi Kenya

16. Purple Day Halifax Nova Scotia Canada

17. Pontificia Universidad Católica de Chile Santiago Chile

18. Centro Medico Nacional 20 de Noviembre, Médica Sur Mexico City Mexico

19. Department of Neurology 1 Kepler University Hospital, Johannes Kepler University Linz Austria

20. Department of Medicine (Austin Health) University of Melbourne Melbourne Victoria Australia

21. Formerly Epilepsy Action London UK

22. Department of Pediatrics, CanChild Centre for Childhood Disability Research, Faculty of Health Sciences McMaster University Hamilton Ontario Canada

23. Departments of Psychiatry and Neurology University Hospitals Cleveland Medical Center, Case Western Reserve University School of Medicine Cleveland Ohio USA

24. All Indian Institute of Medicine Sciences New Delhi India

25. Red Cross War Memorial Children's Hospital, Neuroscience Institute University of Cape Town Cape Town South Africa

26. Epilepsie Empowerment Deutschland Karlsruhe Germany

27. Department of Neurology Northwestern Feinberg School of Medicine Chicago Illinois USA

Abstract

AbstractAt 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.

Publisher

Wiley

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1111/epi.17976

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1. 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;2024-05-13