Abstract
ObjectiveEstablishing 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).MethodsWe 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.ResultsFrom 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.SignificanceOur 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.
Highlights
Epilepsy is a common neurological disorder that can be defined by a persisting tendency for epileptic seizures
We identified 39 outcomes across 10 domains that contributed toward a core outcome set for use in epilepsy research
Travel costs were reimbursed on behalf of participants as well as a payment given to nonsalaried individuals
Summary
Epilepsy is a common neurological disorder that can be defined by a persisting tendency for epileptic seizures. It is important to consider the adverse effects of antiepileptic medication as well as nonseizure outcomes, in developing children. The social and psychological consequences of seizures and children's perspectives are becoming more valued, and health‐related quality of life (HRQoL) is an increasing focus for research.[2] It is important to consider that epilepsy‐specific quality of life is not determined by seizures alone but can be influenced by the child's learning, mental health, and social support.[3,4] To overcome these issues, it is crucial to decide on a core set of outcomes that are of greater importance to children and their families
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