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Validity of neurodevelopmental outcomes of children born very preterm assessed during routine clinical follow-up in England
  1. Hilary S Wong1,2,
  2. Frances M Cowan2,
  3. Neena Modi2
  4. On behalf of the Medicines for Neonates Investigator Group
    1. 1 Department of Paediatrics, University of Cambridge, Cambridge, UK
    2. 2 Section of Neonatal Medicine, Department of Medicine, Chelsea and Westminster Hospital Campus, Imperial College London, London, UK
    1. Correspondence to Dr Hilary S Wong, Department of Paediatrics, University of Cambridge, Box 116, Cambridge Biomedical Campus, Cambridge CB2 0QQ, UK; syw27{at}


    Objective To determine the validity of assessing and recording the neurodevelopmental outcome of very preterm infants during routine clinical follow-up in England.

    Design Children born <30 weeks gestation, attending routine clinical follow-up at post-term ages 20–28 months, were recruited. Data on neurodevelopmental outcomes were recorded by the reviewing clinician in a standardised format in the child’s electronic patient record, based on a set of key questions designed to be used without formal training or developmental testing. Using a predefined algorithm, each participant was classified as having ‘no’, ‘mild/moderate’ or ‘severe’ impairment in cognitive, communication and motor domains. All participants also received a research assessment by a single assessor using the Bayley Scales of Infant Development, third edition (Bayley-III). The sensitivity and specificity of routine data in capturing impairment (any Bayley-III score <85) or severe impairment (any Bayley-III score <70) was calculated.

    Results 190 children participated. The validity of routine assessments in identifying children with no impairment and no severe impairment was high across all domains (specificities 83.9%–100.0% and 96.6%–100.0%, respectively). However, identification of impairments, particularly in the cognitive (sensitivity 69.7% (55.1%–84.3%)) and communication (sensitivity (53.2% (42.0%–64.5%)) domains, was poor.

    Conclusions Neurodevelopmental status determined during routine clinical assessment lacks adequate sensitivity in cognitive and communication domains. It is uncertain whether this reflects the assessment or/and the recording of findings. As early intervention may improve education and social outcomes, this is an important area for healthcare quality improvement research.

    • preterm birth
    • neurodevelopment
    • electronic health records

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    • Contributors HSW, FMC and NM contributed to the conception and design of the study and analysis and interpretation of data. HSW drafted the manuscript; FMC and NM reviewed it critically for important intellectual content. All authors read and approved the final manuscript.

    • Funding This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-0707-10010). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

    • Competing interests None declared.

    • Ethics approval Royal Free Hospital Research Ethics Committee (REC 10/H0720/35).

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

    • Data sharing statement All available data can be obtained by contacting the corresponding author.

    • Collaborators Medicines for Neonates Investigators are Deborah Ashby (Imperial College London), Peter Brocklehurst (University of Birmingham), Kate Costeloe (Queen Mary University of London), Elizabeth Draper (University of Leicester), Jacquie Kemp (London), Azeem Majeed (Imperial College London), Neena Modi (Imperial College London), Stavros Petrou (University of Warwick), Alys Young (University of Manchester), Jane Abbott and Zoe Chivers (Bliss, London).

    • Presented at This study was presented at the British Association of Perinatal Medicine section of the Royal College of Paediatrics and Child Health 2015 Annual Conference in Birmingham, UK.