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.
Journal: Epilepsia
Volume:
Issue:
Year of Publication:
Affiliated Institutions:
Institute of Systems, Molecular and Integrative Biology (ISMIB), University of Liverpool, Liverpool, UK.
International Consortium for Health Outcomes Measurement, London, UK.
International Bureau for Epilepsy, Africa Region, University of Edinburgh, Edinburgh, UK.
Indiana University School of Nursing, Indianapolis, Indiana, USA.
Lived Experience Representative, Cincinnati, Ohio, USA.
University of Liverpool, Liverpool, UK.
The Edmond and Lilly Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Israel.
Boston Children's Hospital, Boston, Massachusetts, USA.
University of Gothenburg, Gothenburg, Sweden.
Developmental Neurosciences Dept, UCL Great Ormond Street Institute of Child Health, London, UK.
KK Women's and Children's Hospital, Duke-NUS, Singapore.
The University of Queensland Medical School, Brisbane, Queensland, Australia.
Duke University Medical Center and Veterans Affairs Medical Center, Durham, North Carolina, USA.
LLM (International Human Rights Law), LLM (Financial Services Law), Galway, Ireland.
Mental Health Alliance of Kenya, Kenya.
Founder of Purple Day, Halifax, Nova Scotia, Canada.
Pontificia Universidad Católica de Chile, Santiago, Chile.
Centro Medico Nacional de Noviembre, Médica Sur, Mexico City, Mexico.
Department of Neurology , Kepler University Hospital, Johannes Kepler University, Linz, Austria.
Department of Medicine (Austin Health), The University of Melbourne, Melbourne, Victoria, Australia.
Formerly Epilepsy Action, London, UK.
Department of Pediatrics, CanChild Centre for Childhood Disability Research, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.
Departments of Psychiatry and of Neurology, University Hospitals Cleveland Medical Center, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA.
All Indian Institute of Medicine Sciences, New Delhi, India.
Red Cross War Memorial Children's Hospital, Neuroscience Institute, University of Cape Town, Cape Town, South Africa.
Epilepsie Empowerment Deutschland e.V, Karlsruhe, Germany.
Department of Neurology, Northwestern Feinberg School of Medicine, Chicago, Illinois, USA.
Abstract summary
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.
Authors & Co-authors:
Mitchell James W JW
Sossi Frieda F
Miller Isabel I
Jaber Paula Blancarte PB
Das-Gupta Zofia Z
Fialho Luz Sousa LS
Amos Action A
Austin Joan K JK
Badzik Scott S
Baker Gus G
Zeev Bruria Ben BB
Bolton Jeffrey J
Chaplin John E JE
Cross J Helen JH
Chan Derrick D
Gericke Christian A CA
Husain Aatif M AM
Lally Lorraine L
Mbugua Sharon S
Megan Cassidy C
Mesa Tomás T
Nuñez Lilia L
von Oertzen Tim J TJ
Perucca Emilio E
Pullen Angie A
Ronen Gabriel M GM
Sajatovic Martha M
Singh Mamta B MB
Wilmshurst Jo M JM
Wollscheid Leonie L
Berg Anne T AT
Study Outcome
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