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Original article
Development of a gastroschisis core outcome set
  1. Benjamin Saul Raywood Allin1,
  2. Nigel J Hall2,
  3. Andrew R Ross3,
  4. Sean S Marven4,
  5. Jennifer J Kurinczuk1,
  6. Marian Knight1
  7. on behalf of the NETS1G collaboration
    1. 1 National Perinatal Epidemiology Unit, University of Oxford, Oxford, UK
    2. 2 Southampton Children’s Hospital, Southampton, UK
    3. 3 Oxford Children’s Hospital, Oxford, UK
    4. 4 Sheffield Children’s Hospital, Oxford, UK
    1. Correspondence to Dr Benjamin Saul Raywood Allin, National Perinatal Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Oxford OX37LF, UK ; benjaminallin{at}doctors.org.uk

    Abstract

    Objective Outcome reporting heterogeneity impedes identification of gold standard treatments for children born with gastroschisis. Use of core outcome sets (COSs) in research reduces outcome reporting heterogeneity and ensures that studies are relevant to patients. The aim of this study was to develop a gastroschisis COS.

    Design and setting Systematic reviews and stakeholder nomination were used to identify candidate outcomes that were subsequently prioritised by key stakeholders in a three-phase online Delphi process and face-to-face consensus meeting using a 9-point Likert scale. In phases two and three of the Delphi process, participants were shown graphical and numerical representations of their own, and all panels scores for each outcome respectively and asked to review their previous score in light of this information. Outcomes were carried forward to the consensus meeting if prioritised by two or three stakeholder panels in the third phase of the Delphi process. The COS was formed from outcomes where ≥70% of consensus meeting participants scored the outcome 7–9 and <15% of participants scored it 1–3.

    Results 71 participants (84%) completed all phases of the Delphi process, during which 87 outcomes were assessed. Eight outcomes, mortality, sepsis, growth, number of operations, severe gastrointestinal complication, time on parenteral nutrition, liver disease and quality of life for the child, met criteria for inclusion in the COS.

    Conclusions Eight outcomes have been included in the gastroschisis COS as a result of their importance to key stakeholders. Implementing use of the COS will increase the potential for identification of gold standard treatments for the management of children born with gastroschisis.

    • gastroschisis
    • paediatric surgery
    • epidemiology
    • core outcome sets

    This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

    https://doi.org/10.1136/archdischild-2017-314560

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      Footnotes

      • Contributors BSRA was responsible for the design of the study, day-to-day management of the study, analysis of data and drafting of the manuscript. NJH, ARR, SSM, JJK and MK were responsible for design of the study, management of the study and contributed to critical revisions of the manuscript. Members of NETS1G collaboration contributed critically to the academic content of the study and have reviewed and critically revised the manuscript.

      • Funding MK is funded by a National Institute for Health Research (NIHR) Professorship. BSRA is funded by an NIHR Doctoral Research Fellowship. NJH is supported by the NIHR through the NIHR Southampton Biomedical Research Centre in nutrition.

      • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. The NIHR had no role in the design and conduct of the study; the collection, management, analysis and interpretation of the data; the preparation, review and approval of the manuscript; or the decision to submit the manuscript for publication.

      • Competing interests None declared.

      • Ethics approval The Health Research Authority deemed the study to be service evaluation/service development, and review by an ethics committee was therefore not required (http://www.hra-decisiontools.org.uk/research/).

      • Provenance and peer review Not commissioned; externally peer reviewed.

      • Collaborators The following people form the NETS1G collaboration: Ceri Caven, relative of a child born with gastroschisis; Lily Chapman, Relative of a child born with gastroschisis; Brian Davies, Nottingham Children’s Hospital; Melanie Drewett, Southampton Children’s Hospital; Simon Eaton, Institute for Child Health, Great Ormond Street Hospital; Sijo Francis, St Georges Hospital; Oliver Gee, Birmingham Children’s Hospital; Anne Hickey, King’s College Hospital; Jonathan Hind, King’s College Hospital; Anna-May Long, National Perinatal Epidemiology Unit; Heather Norris, Bristol Children’s Hospital; Gareth Penman, Sheffield Children’s Hospital; Bernadette Reda, Birmingham Children’s Hospital; Davee Ridgers, relative of a child born with gastroschisis; Claire Ridgers, relative of a child born with gastroschisis; Clare Skerritt, Evelina Children’s Hospital; Martin Ward-Platt, Royal Victoria Infirmary; Naomi Wright, King’s College Hospital.