A data-driven approach to understanding neonatal palliative care needs in England and Wales: a population based study 2015-2020
File(s)
Accepted version
Author(s)
Harnden, Fergus
Lanoue, Julia
Modi, neena
Uthaya, Sabita
Battersby, Cheryl
Type
Journal Article
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: 6,239/12,123 (51%) conformed to BAPM category 4 (postnatal conditions with high risk of severe impairment), 3,796 (31%) to category 2 (antenatal/postnatal diagnosis with high risk of significant morbidity or death), 1,399 (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. 6,814/12,123 (56%) were discharged home, 2,385 (20%) were discharged to other settings and 2,914 (24%) died before neonatal discharge. 3,000/5,914 (51%) babies who died during neonatal care did not conform to any BAPM category. Of these, 2,630/3,000 (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.
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: 6,239/12,123 (51%) conformed to BAPM category 4 (postnatal conditions with high risk of severe impairment), 3,796 (31%) to category 2 (antenatal/postnatal diagnosis with high risk of significant morbidity or death), 1,399 (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. 6,814/12,123 (56%) were discharged home, 2,385 (20%) were discharged to other settings and 2,914 (24%) died before neonatal discharge. 3,000/5,914 (51%) babies who died during neonatal care did not conform to any BAPM category. Of these, 2,630/3,000 (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.
Date Issued
2023-09-01
Date Acceptance
2023-03-02
Citation
Archives of Disease in Childhood: Fetal and Neonatal Edition, 2023, 108 (5), pp.540-544
ISSN
1359-2998
Publisher
BMJ Publishing Group
Start Page
540
End Page
544
Journal / Book Title
Archives of Disease in Childhood: Fetal and Neonatal Edition
Volume
108
Issue
5
Copyright Statement
Copyright © 2023 The Author(s). This article has been accepted for publication in ADC Fetal & Neonatal, 2023 following peer review, and the Version of Record can be accessed online at http://dx.doi.org/10.1136/archdischild-2022-325157
Identifier
https://fn.bmj.com/content/early/2023/03/22/archdischild-2022-325157
Publication Status
Published
Date Publish Online
2023-03-23