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Priorities for collaborative research using very preterm birth cohorts
  1. Jennifer Zeitlin1,
  2. Mariane Sentenac1,
  3. Andrei S Morgan1,
  4. Pierre Yves Ancel1,
  5. Henrique Barros2,
  6. Marina Cuttini3,
  7. Elizabeth Draper4,
  8. Samantha Johnson4,
  9. Jo Lebeer5,
  10. Rolf F Maier6,
  11. Mikael Norman7,8,
  12. Heili Varendi9
  13. the RECAP Preterm child cohort research group
    1. 1 Université de Paris, CRESS, Obstetrical Perinatal and Pediatric Epidemiology Research Team, EPOPé, INSERM, INRA, F-75004, Paris, France
    2. 2 EPIUnit-- Instituto de Saúde Pública da Universidade do Porto, Porto, Portugal
    3. 3 Clinical Care and Management Innovation Research Area, Bambino Gesù Children’s Hospital, Rome, Italy
    4. 4 Department of Health Sciences, University of Leicester, Leicester, United Kingdom
    5. 5 Department of Primary & Interdisciplinary Care, Disability Studies, Faculty of Medicine, University of Antwerp, Antwerpen, Belgium
    6. 6 Children's Hospital, University Hospital, Philipps University Marburg, Marburg, Germany
    7. 7 Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Stockholm, Sweden
    8. 8 Department of Neonatal Medicine, Karolinska University Hospital, Stockholm, Sweden
    9. 9 University of Tartu, Tartu University Hospital, Tartu, Estonia
    1. Correspondence to Dr Jennifer Zeitlin, INSERM U1153, Paris 75014, France; jennifer.zeitlin{at}inserm.fr

    Abstract

    Objectives To develop research priorities on the consequences of very preterm (VPT) birth for the RECAP Preterm platform which brings together data from 23 European VPT birth cohorts.

    Design and setting This study used a two-round modified Delphi consensus process. Round 1 was based on 28 research themes related to childhood outcomes (<12 years) derived from consultations with cohort researchers. An external panel of multidisciplinary stakeholders then ranked their top 10 themes and provided comments. In round 2, panel members provided feedback on rankings and on new themes suggested in round 1.

    Results Of 71 individuals contacted, 64 (90%) participated as panel members comprising obstetricians, neonatologists, nurses, general and specialist paediatricians, psychologists, physiotherapists, parents, adults born preterm, policy makers and epidemiologists from 17 countries. All 28 initial themes were ranked in the top 10 by at least six panel members. Highest ranking themes were: education (73% of panel members' top 10 choices); care and outcomes of extremely preterm births, including ethical decisions (63%); growth and nutrition (60%); emotional well-being and social inclusion (55%); parental stress (55%) and impact of social circumstances on outcomes (52%). Highest ranking themes were robust across panel members classified by background. 15 new themes had at least 6 top 10 endorsements in round 2.

    Conclusions This study elicited a broad range of research priorities on the consequences of VPT birth, with good consensus on highest ranks between stakeholder groups. Several highly ranked themes focused on the socioemotional needs of children and parents, which have been less studied.

    • epidemiology
    • neonatology
    • neurodevelopment
    • patient perspective
    https://creativecommons.org/licenses/by/4.0/

    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-2019-317991

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      Footnotes

      • Collaborators RECAP Preterm child cohort research group: Ulrika Ådén, Valerie Benhammou, Josephine Funck Bilsteen, Klaus Boerch, Thomas Halvorsen, Eero Kajantie, Karin Kallen, Liisa Lehtonen, Veronique Pierrat, Iemke Sarrechia, Patrick Van Reempts, Johanna M. Walz, Dieter Wolke, Milla Ylijoki.

      • Contributors JZ, MS, ASM, PYA, HB, MC, ED, SJ, JL, RFM, MN, HV made substantial contributions to the conception of the study objectives and design. JZ, MS were responsible for the analysis of the data and drafted the first draft of the manuscript. JZ, MS, ASM, PYA, HB, MC, ED, SJ, JL, RFM, MN, HV and RECAP Preterm child cohort research group contributed to interpretation of data and revised the manuscript critically for important intellectual content. JZ, MS, ASM, PYA, HB, MC, ED, SJ, JL, RFM, MN, HV provided final approval of the version to be published and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

      • Funding This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement no. 733280.

      • Competing interests None declared.

      • Patient consent for publication Not required.

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

      • Data availability statement No data are available. The authors did not get authorisation from the panel members to share their responses outside the study team. Requests for more information and additional tabulations can be made from the authors.