EGA Institute for Women's Health



Development of a core outcome set and associated measurement tools for neonatal palliative and end-of-life care



Death in the first 28 days of life, or ‘neonatal death’, represents the highest number of deaths in children under 5 in the UK. Each year 1,200 babies die during this period, with most neonatal deaths happening on neonatal units where babies receive treatment from specialist doctors and nurses. For many families, conversations will have occurred with professionals around whether or not to continue with lifesaving treatment for their babies. If it is agreed continuing treatment is not in babies’ best interests, palliative, or ‘end-of-life care’, will be provided to babies and families.

What constitutes end-of-life care, however, is unclear and professionals often provide different treatment to different families, reporting different outcomes in their research. This means we cannot compare whether one approach to neonatal end-of-life care is better than another. Creating a common, or ‘core’ set of outcomes from which to measure neonatal end-of-life care would allow us to develop measures of good practice and improve our care of families. These outcomes must reflect the needs of families involved; these are currently unknown. This is particularly relevant for Black, Asian and Ethnic Minority families whose infants are at significantly higher risk of death than other populations.


The aim of the study is to develop a Core Outcome Set (COS) and associated measurement tools for neonatal palliative care, which will consider the views of parents, healthcare professionals, researchers, and policy makers.


In this study there are two strands of participation

1.            Qualitative interviews (with healthcare professionals and parents)

2.            A Delphi survey (with healthcare professionals and parents)

Current progress

We are currently conducting qualitative interviews. Please see our participant information sheets below for further information. If you would like to participate please email our study team neopace@ucl.ac.uk

Study documents