Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus

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; Christopher Morris

doi:10.1111/epi.14735

Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus

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, Christopher Morris

Research output: Contribution to journal › Review article › peer-review

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Abstract

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.

Original language	English
Pages (from-to)	857-871
Number of pages	15
Journal	Epilepsia Open
Volume	60
Issue number	5
DOIs	https://doi.org/10.1111/epi.14735
Publication status	Accepted/In press - 27 Mar 2019

Keywords

children
core outcome set
epilepsy
pediatric
young people

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10.1111/epi.14735Licence: CC BY

Core Health Outcomes in _CRUDGINGTON_ Accepted 27 March 2019_ GOLD VoR (CC BY)Final published version, 0.99 MBLicence: CC BY

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Crudgington, H., Rogers, M., Bray, L., Carter, B., Currier, J., Dunkley, C., Gibbon, F. M., Hughes, D., Lyle, S., Roberts, D., Tudur Smith, C., Gringras, P., Pal, D. K., & Morris, C. (Accepted/In press). Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus. Epilepsia Open, 60(5), 857-871. https://doi.org/10.1111/epi.14735

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title = "Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus",

abstract = "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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author = "Holly Crudgington and Morwenna Rogers and Lucy Bray and Bernie Carter and Janet Currier and Colin Dunkley and Gibbon, {Frances M.} and Dyfrig Hughes and Samantha Lyle and Deborah Roberts and {Tudur Smith}, Catrin and Paul Gringras and Pal, {Deb K} and Christopher Morris",

year = "2019",

month = mar,

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doi = "10.1111/epi.14735",

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Crudgington, H, Rogers, M, Bray, L, Carter, B, Currier, J, Dunkley, C, Gibbon, FM, Hughes, D, Lyle, S, Roberts, D, Tudur Smith, C, Gringras, P, Pal, DK & Morris, C 2019, 'Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus', Epilepsia Open, vol. 60, no. 5, pp. 857-871. https://doi.org/10.1111/epi.14735

TY - JOUR

T1 - Core Health Outcomes in Childhood Epilepsy (CHOICE)

T2 - Development of a core outcome set using systematic review methods and a Delphi survey consensus

AU - Crudgington, Holly

AU - Rogers, Morwenna

AU - Bray, Lucy

AU - Carter, Bernie

AU - Currier, Janet

AU - Dunkley, Colin

AU - Gibbon, Frances M.

AU - Hughes, Dyfrig

AU - Lyle, Samantha

AU - Roberts, Deborah

AU - Tudur Smith, Catrin

AU - Gringras, Paul

AU - Pal, Deb K

AU - Morris, Christopher

PY - 2019/3/27

Y1 - 2019/3/27

N2 - 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.

AB - 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.

KW - children

KW - core outcome set

KW - epilepsy

KW - pediatric

KW - young people

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U2 - 10.1111/epi.14735

DO - 10.1111/epi.14735

M3 - Review article

VL - 60

SP - 857

EP - 871

JO - Epilepsia Open

JF - Epilepsia Open

IS - 5

ER -

Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus

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