The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care

Background
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a ‘good’ death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care.

Method
This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care.

Discussion
Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area.

Trial registration
The study has been registered with the COMET initiative (https://www.comet-initiative.org/Studies/Details/1470) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).

Aim

The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care.

Contributors

Katie Gallagher, Kathy Chant, Alex Mancini, Myra Bluebond-Langner & Neil Marlow

Publication

Journal: BMC Palliative Care
Volume: 22
Issue: 203
Pages: -
Year: 2023
DOI: 10.1186/s12904-023-01326-x

Further Study Information

Current Stage: Completed
Date:
Funding source(s): This study is funded through a National Institute for Health and Care Research (NIHR) Clinical Lectureship award (NIHR302193) following independent peer review. It obtained UCL Research Ethics approval following independent peer review. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.


Health Area

Disease Category: Neonatal care

Disease Name: Palliative care

Target Population

Age Range: 0

Sex: Either

Nature of Intervention: Palliative

Stakeholders Involved

- Charities
- Clinical experts
- Ethicists
- Families
- Methodologists
- Patient/ support group representatives
- Policy makers
- Researchers
- Service commissioners
- Service providers
- Service users
- Statisticians

Study Type

- COS (Other)

Method(s)

- Consensus meeting
- Delphi process
- Focus group(s)
- Interview
- Systematic review

This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key
stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care

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