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Original research
EPICE cohort: two-year neurodevelopmental outcomes after very preterm birth
  1. Elizabeth S Draper1,
  2. Jennifer Zeitlin2,
  3. Bradley N Manktelow1,
  4. Aurelie Piedvache2,
  5. Marina Cuttini3,
  6. Anna-Karin Edstedt Bonamy4,5,
  7. Rolf Maier6,
  8. Corine Koopman-Esseboom7,
  9. Janusz Gadzinowski8,
  10. Klaus Boerch9,
  11. Patrick van Reempts10,
  12. Heili Varendi11,
  13. Samantha J Johnson1
  14. on behalf of the EPICE group
    1. 1 Department of Health Sciences, University of Leicester, Leicester, Leicestershire, UK
    2. 2 Obstetrical, Perinatal and Paediatric Epidemiology Research Group, Centre for Epidemiology and Biostatistics (U1153), INSERM, Paris, France
    3. 3 Clinical Care and Management Innovation Research Area, Bambino Gesu Pediatric Hospital, Roma, Lazio, Italy
    4. 4 Clinical Epidemiology Division, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
    5. 5 Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden
    6. 6 Children's Hospital, University Hospital, Philipps-Universitat Marburg, Marburg, Germany
    7. 7 Department of Neonatology, University Medical Centre Utrecht/Wilhelmina Children's Hospital, Utrecht, The Netherlands
    8. 8 Department of Neonatology, Poznan University of Medical Sciences, Poznan, Poland
    9. 9 Department of Paediatrics, Hvidovre Hospital, Hvidovre, Denmark
    10. 10 Department of Neonatology, University of Antwerp and Antwerp University Hospital, Edegem, Belgium
    11. 11 Tartu University Hospital, University of Tartu, Tartu, Estonia
    1. Correspondence to Professor Elizabeth S Draper, Health Sciences, University of Leicester, Leicester, Leicestershire, UK; msn{at}le.ac.uk

    Abstract

    Objective To determine whether the variation in neurodevelopmental disability rates between populations persists after adjustment for demographic, maternal and infant characteristics for an international very preterm (VPT) birth cohort using a standardised approach to neurodevelopmental assessment at 2 years of age.

    Design Prospective standardised cohort study.

    Setting 15 regions in 10 European countries.

    Patients VPT births: 22+0–31+6 weeks of gestation.

    Data collection Standardised data collection tools relating to pregnancy, birth and neonatal care and developmental outcomes at 2 years corrected age using a validated parent completed questionnaire.

    Main outcome measures Crude and standardised prevalence ratios calculated to compare rates of moderate to severe neurodevelopmental impairment between regions grouped by country using fixed effects models.

    Results Parent reported rates of moderate or severe neurodevelopmental impairment for the cohort were: 17.3% (ranging 10.2%–26.1% between regions grouped by country) with crude standardised prevalence ratios ranging from 0.60 to 1.53. Adjustment for population, maternal and infant factors resulted in a small reduction in the overall variation (ranging from 0.65 to 1.30).

    Conclusion There is wide variation in the rates of moderate to severe neurodevelopmental impairment for VPT cohorts across Europe, much of which persists following adjustment for known population, maternal and infant factors. Further work is needed to investigate whether other factors including quality of care and evidence-based practice have an effect on neurodevelopmental outcomes for these children.

    • epidemiology
    • health services research
    • neurodevelopment
    http://creativecommons.org/licenses/by-nc/4.0/

    This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

    https://doi.org/10.1136/archdischild-2019-317418

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      Footnotes

      • Collaborators The following EPICE group members are non-author contributors to this manuscript: Evelyne Martens, Guy Martens†, Asbjoern Hasselager, Lene Huusom, Ole Pryds, Tom Weber, Liis Toome, Pierre Yves Ancel, Beatrice Blondel, Antoine Burguet, Pierre Henri Jarreau, Patrick Truffert, Bjorn Misselwitz, Stephan Schmidt, Ludwig Gortner, Dante Baronciani, Giancarlo Gargano, Rocco Agostino, Domenico DiLallo, Francesco Franco, Ileana Croci, Arno van Heijst, Julia Gunkel, Joppe Nijman, Jan Mazela, Luis Mendes Graça, Maria do Ceu Machado, Carina Rodrigues, Teresa Rodrigues, Henriques Barros, Raquel Costa, Mikael Norman, Emilija Wilson, Elaine Boyle, Alan C Fenton, David WA Milligan, Mercedes Bonet, Camille Bonnet, Anna-Veera Sepannen.

      • Contributors ESD conceptualised and designed the study, acquired the data, developed the analysis strategy, interpreted the data and drafted the initial manuscript. JZ conceptualised and designed the study, acquired the data, developed the analysis strategy, interpreted the data and revised the manuscript. BNM and AP designed the analysis strategy and carried out the data analysis, and revised the manuscript. SJ contributed to the development of the analysis strategy and reviewed and revised the manuscript. MC, A-KEB, RM, CK-E, JG, KB, PR and HV designed and organised the study, acquired the data and reviewed and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

      • Funding This work was supported by the European Union’s Seventh Framework Programme (FP7/2007-2013, No 259882) and the European Union’s Horizon 2020 research and innovation programme (No 633724).

      • Competing interests None declared.

      • Patient consent for publication Not required.

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

      • Data availability statement Data are available on reasonable request.

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