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Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review
Holly Crudgington1, Morwenna Rogers2, Lucy Bray3
1Basic and Clinical Neuroscience Department, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, UK.
Insights
A core outcome set (COS) was established for childhood rolandic epilepsy (RE) research. This 39-outcome set will standardize outcome reporting in intervention trials for children with RE.
Area of Science:
- Pediatric Neurology
- Clinical Trial Methodology
- Epilepsy Research
Background:
- Standardized outcome reporting is crucial for improving the utility of health research.
- Currently, no established core outcome set (COS) exists for childhood epilepsies.
- Rolandic epilepsy (RE) is a common childhood epilepsy syndrome requiring standardized outcome measures.
Purpose of the Study:
- To select a core outcome set (COS) for evaluating interventions in children with rolandic epilepsy (RE).
- To ensure consistency and comparability in research outcomes for childhood RE.
Main Methods:
- Followed COMET (Core Outcome Measures in Effectiveness Trials) Initiative guidelines.
- Conducted a systematic review to identify candidate outcomes from existing research.
- Utilized a Delphi survey with young people, parents, and professionals to rate outcome importance.
- Convened a consensus meeting to finalize the core outcome set.
Main Results:
- Identified 48 candidate outcomes from 37 eligible studies.
- Achieved high participation rates in the Delphi survey (62% Round 1, 78% Round 2).
- Consensus was reached on 39 outcomes across 10 domains for the final COS.
Conclusions:
- A pragmatic and proportionate methodology was employed to develop the COS.
- The established COS provides a standardized framework for evaluating interventions in childhood RE.
- This COS will enhance the quality and comparability of research on childhood rolandic epilepsy.
Objective:
Establishing a core set of outcomes to be evaluated and reported in intervention trials aims to improve the usefulness of health research. There is no established core outcome set (COS) for childhood epilepsies. The aim of this study was to select a COS to be used in evaluative research of interventions for children with rolandic epilepsy (RE).
Methods:
We followed guidance from the COMET (Core Outcome Measures in Effectiveness Trials) Initiative. First, we identified outcomes that had been measured in research through a systematic review. Second, young people with RE, parents, and professionals were invited to take part in a Delphi survey in which participants rated the importance of candidate outcomes. Last, a face-to-face meeting was convened to seek consensus on which outcomes were critical to include and to ratify the final COS.
Results:
From 37 eligible papers in the review, we identified and included 48 candidate outcomes in the survey. We sent invitations to 165 people registered to take part in the survey; of these, 102 (62%) completed Round 1, and 80 (78%) completed Round 2 (three young people, 16 parents, 61 professionals). In Round 2 we included four additional outcomes suggested by participants in Round 1. The consensus meeting included two young people, four parents, and nine professionals who were eligible to vote and ratified the COS as 39 outcomes across 10 domains.
Significance:
Our methodology was a proportionate and pragmatic approach toward producing a COS for evaluating research on interventions aiming to improve the health of children with RE.
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