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  • Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015–2020

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Original research
Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015–2020
  1. Fergus Harnden1,2,
  2. Julia Lanoue2,
  3. Neena Modi1,2,
  4. Sabita N Uthaya1,2,
  5. Cheryl Battersby1,2
  6. on behalf of the UK Neonatal Collaborative
  1. 1 Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
  2. 2 Neonatal Medicine, School of Public Health, Faculty of Medicine, Imperial College London, London, UK
  1. Correspondence to Dr Cheryl Battersby, Neonatal Medicine, Imperial College London, London, UK; c.battersby{at}imperial.ac.uk

Abstract

Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care.

Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were mapped to categories within the British Association of Perinatal Medicine’s (BAPM) framework on palliative care. We extracted data from the National Neonatal Research Database on all babies born and admitted to neonatal units in England and Wales 2015–2020.

Outcomes The number and proportion of babies meeting BAPM categories, their discharge outcomes and the characteristics of babies who died during neonatal care but did not fulfil any BAPM category.

Results 12 123/574 954 (2.1%) babies met one or more BAPM category: 6239/12 123 (51%) conformed to BAPM category 4 (postnatal conditions with high risk of severe impairment), 3796 (31%) to category 2 (antenatal/postnatal diagnosis with high risk of significant morbidity or death), 1399 (12%) to category 3 (born at margin of viability) and 288 (2%) to category 1 (antenatal/postnatal diagnosis not compatible with long-term survival); 401 babies (3%) met criteria for multiple categories. 6814/12 123 (56%) were discharged home, 2385 (20%) were discharged to other settings and 2914 (24%) died before neonatal discharge. 3000/5914 (51%) babies who died during neonatal care did not conform to any BAPM category. Of these, 2630/3000 (88%) were born preterm.

Conclusions At least 2% of babies admitted to neonatal units had palliative care needs according to existing BAPM categories; most survived to discharge. Of deaths, 51% were not captured by the BAPM categories; most were extremely preterm.

  • Palliative Care
  • Neonatology
  • Epidemiology

Data availability statement

Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. The NNRD is a national Data Asset discoverable through the Health Data Research UK Alliance Innovation Gateway (https://www.healthdatagateway.org/) and is available for use by external investigators.

https://doi.org/10.1136/archdischild-2022-325157

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    Data availability statement

    Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. The NNRD is a national Data Asset discoverable through the Health Data Research UK Alliance Innovation Gateway (https://www.healthdatagateway.org/) and is available for use by external investigators.

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    Footnotes

    • Twitter @NeenaModi1, @DrCBattersby

    • Collaborators UK Neonatal Collaborative Contributing neonatal units listed in online supplemental file 7.

    • Contributors CB, SNU and NM conceived this project. JL carried out the data extraction and FH carried out the analyses. The first draft of the manuscript was written by FH and revised by CB, SNU and NM. CB is guarantor and accepts full responsibility for the work and conduct of the study, had access to the data, and controlled the decision to publish.

    • Funding This work was supported by grant funding from Chelsea & Westminster NHS Foundation Trust, its charity CW+ and The True Colours Trust.

    • Disclaimer The funders of this study had no role in the study design, the data collection, analysis or interpretation, the writing of this report, nor in the decision to submit for publication.

    • Competing interests CB is funded by the UK NIHR through an Advanced Fellowship Award, has received support from Chiesi Pharmaceuticals to attend educational conferences and been investigator on research grants from the National Institute of Health Research. CB is deputy chair for the NIHR Prioritisation committee for Hospital-based care.

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

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.