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Original research
Neurodevelopmental status and follow-up in preschool children with heart disease in London, UK
  1. Aparna Hoskote1,2,
  2. Deborah Ridout2,3,
  3. Victoria Banks4,
  4. Suzan Kakat1,2,
  5. Monica Lakhanpaul3,5,
  6. Christina Pagel6,
  7. Rodney CG Franklin7,
  8. Thomas Witter8,
  9. Rhian Lakhani8,
  10. Shane M Tibby9,
  11. David Anderson10,
  12. Victor Tsang1,2,
  13. Jo Wray1,2,
  14. Katherine Brown1,2
  1. 1 Heart and Lung Directorate, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK
  2. 2 NIHR Great Ormond Street Hospital Biomedical Research Centre, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK
  3. 3 Population Policy and Practice Department, UCL Great Ormond Street Institute of Child Health, London, UK
  4. 4 Information Office, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK
  5. 5 Whittington Health NHS Trust, London, UK
  6. 6 Clinical Operational Research Unit, University College of London, London, UK
  7. 7 Paediatric Cardiology, Royal Brompton and Harefield NHS Trust, London, UK
  8. 8 Paediatric Cardiology and Cardiac Surgery, Evelina London Children's Hospital, London, UK
  9. 9 Paediatric Intensive Care Unit, Evelina London Children's Hospital, London, UK
  10. 10 Cardiothoracic Surgery, Evelina London Children's Hospital, London, UK
  1. Correspondence to Dr Aparna Hoskote, Heart and Lung Directorate, Great Ormond Street Hospital For Children NHS Foundation Trust, London WC1N 3JH, UK; aparna.hoskote{at}gosh.nhs.uk

Abstract

Objective To describe neurodevelopment and follow-up services in preschool children with heart disease (HD).

Design Secondary analysis of a prospectively collected multicentre dataset.

Setting Three London tertiary cardiac centres.

Patients Preschool children<5 years of age: both inpatients and outpatients.

Methods We analysed results of Mullen Scales of Early Learning (MSEL) and parental report of follow-up services in a representative convenience sample evaluated between January 2014 and July 2015 within a previous study.

Results Of 971 preschool children: 577 (59.4%) had ≥1 heart operation, 236 (24.3%) had a known diagnosis linked to developmental delay (DD) (‘known group’) and 130 (13.4%) had history of clinical event linked to DD. On MSEL assessment, 643 (66.2%) had normal development, 181 (18.6%) had borderline scores and 147 (15.1%) had scores indicative of DD. Of 971 children, 609 (62.7%) were not receiving follow-up linked to child development and were more likely to be under these services with a known group diagnosis, history of clinical event linked to DD and DD (defined by MSEL). Of 236 in known group, parents of 77 (32.6%) and of 48 children not in a known group but with DD 29 (60.4%), reported no child development related follow-up. DD defined by MSEL assessment was more likely with a known group and older age at assessment.

Conclusions Our findings indicate that a ‘structured neurodevelopmental follow-up pathway’ in preschool children with HD should be considered for development and evaluation as children get older, with particular focus on those at higher risk.

  • congenital heart disease
  • neurology
  • early recognition tool
  • surveillance
  • child development

https://doi.org/10.1136/archdischild-2019-317824

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    Footnotes

    • Twitter @AparnaHoskote, @chrischirp

    • Contributors All authors have contributed to the study design, interpretation of findings, drafting of the manuscript and approval of the final manuscript.

    • Funding This project was funded by the National Institute for Health Research Health Services and Delivery Research programme (NIHR HS&DR) (Project No: 12/5005/06) and was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care North Thames at Bart’s Health NHS Trust (NIHR CLAHRC North Thames). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR HS&DR programme, the NHS, or the Department of Health and Social Care.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval The study protocol was approved by the London City Road Research Ethics Committee (study number 14-LO-1442).

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

    • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.