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.
ContributorsJames W. Mitchell, Frieda Sossi, Isabel Miller, Paula Blancarte Jaber, Zofia Das-Gupta, Luz Sousa Fialho, Action Amos, Joan K. Austin, Scott Badzik, Gus Baker, Bruria Ben Zeev, Jeffrey Bolton, John E. Chaplin, J. Helen Cross, Derrick Chan, Christian A. Gericke, Aatif M. Husain, Lorraine Lally, Sharon Mbugua, Cassidy Megan, Tomás Mesa, Lilia Nuñez, Tim J. von Oertzen, Emilio Perucca, Angie Pullen, Gabriel M. Ronen, Martha Sajatovic, Mamta B. Singh, Jo M. Wilmshurst, Leonie Wollscheid, Anne T. Berg
Disease Category: Neurology
Disease Name: Epilepsy
Age Range: 18 - 120
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Consumers (patients)
- Patient/ support group representatives
- Researchers
- COS for practice
- Delphi process
- Literature review
- Semi structured discussion
- Survey