• Holly Crudgington, Morwenna Rogers, Lucy Bray, Bernie Carter, Janet Currier, Colin Dunkley, Frances M Gibbon, Dyfrig Hughes, Samantha Lyle, Deborah Roberts, Catrin Tudur Smith, Paul Gringras, Deb K Pal, and Christopher Morris.
• Basic and Clinical Neuroscience Department, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, UK.
• Epilepsia. 2019 May 1; 60 (5): 857-871.

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.© 2019 The Authors. Epilepsia published by Wiley Periodicals, Inc. on behalf of International League Against Epilepsy.

27 keywords...

hide…