Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Infants,
James W Mitchell1, Frieda Sossi2, Isabel Miller2
1Institute of Systems, Molecular, and Integrative Biology, University of Liverpool, Liverpool, UK.
Insights
A new standard set of core outcomes for pediatric epilepsy care was developed. This aims to improve patient-centered outcomes and measurement consistency in clinical practice globally.
Area of Science:
- Neurology
- Clinical Practice Guidelines
- Patient-Reported Outcomes
Background:
- Currently, there is no global consensus on core outcomes or measurement tools for epilepsy clinical practice.
- Standardized outcome measurement is crucial for evaluating and improving epilepsy care.
Purpose of the Study:
- To establish internationally accepted, standardized core outcomes and measurement methods for epilepsy in infants, children, and adolescents.
- To develop a minimum set of outcomes for clinical practice, focusing on patient-centered care.
Main Methods:
- An international working group, including experts and patient representatives, was convened by the International Consortium for Health Outcomes Measurement (ICHOM).
- Modified Delphi consensus methods with online voting over 12 months were employed to identify core outcomes and measurement tools.
Main Results:
- A core set of 20 outcomes was identified for infants, children, and adolescents with epilepsy.
- Essential developmental outcomes (behavioral, motor, cognitive/language) were included, in addition to adult epilepsy outcomes.
Conclusions:
- The developed set of core outcomes and measurement methods provides a standardized approach for pediatric epilepsy care.
- This initiative will facilitate the consistent implementation of patient-centered outcomes in daily clinical practice.
Abstract:
At 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.
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