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Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus
Author(s) -
Crudgington Holly,
Rogers Morwenna,
Bray Lucy,
Carter Bernie,
Currier Janet,
Dunkley Colin,
Gibbon Frances M.,
Hughes Dyfrig,
Lyle Samantha,
Roberts Deborah,
Tudur Smith Catrin,
Gringras Paul,
Pal Deb K.,
Morris Christopher
Publication year - 2019
Publication title -
epilepsia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.687
H-Index - 191
eISSN - 1528-1167
pISSN - 0013-9580
DOI - 10.1111/epi.14735
Subject(s) - delphi method , psychological intervention , intervention (counseling) , psychology , medicine , systematic review , family medicine , medline , psychiatry , political science , statistics , mathematics , law
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.