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

Katie Gallagher1, Kathy Chant2, Alex Mancini3

  • 1UCL Elizabeth Garrett Anderson Institute for Women's Health, University College London, 74 Huntley Street, WC1E 6AU, London, UK. Katie.gallagher@ucl.ac.uk.

BMC Palliative Care
|December 20, 2023
PubMed

Insights

This study aims to develop a core outcome set for neonatal palliative care to improve end-of-life support for critically ill infants in the UK. Standardizing outcomes will enhance clinical practice and research in neonatal end-of-life care.

Area of Science:

  • Neonatal Medicine
  • Palliative Care
  • Healthcare Outcomes Research

Background:

  • Neonatal death is a leading cause of mortality in UK children under five.
  • Limited evidence exists for neonatal palliative and end-of-life care, leading to practice variations.
  • Developing core outcomes is crucial for standardizing and improving care for families.

Purpose of the Study:

  • To develop a core outcome set for neonatal palliative care.
  • To create associated tools for measuring neonatal palliative care outcomes.
  • To enhance the evidence base for clinical practice in neonatal end-of-life support.

Main Methods:

  • Systematic review and qualitative interviews with stakeholders (parents, healthcare professionals).
  • Online Delphi process to determine core outcomes.
  • Identification of outcome measures for clinical application.
  • Dissemination of the core outcome set across UK neonatal units.

Main Results:

  • The study is developing a standardized set of core outcomes for neonatal palliative care.
  • Associated measurement tools are being identified to support clinical use.
  • The process involves key stakeholders to ensure relevance and applicability.

Conclusions:

  • A core outcome set will standardize minimum reported outcomes for research and quality improvement.
  • This will enhance the evidence base for neonatal palliative and end-of-life care.
  • It will support healthcare professionals in providing consistent, evidence-based care.
Abstract

Keywords:
Neonatal intensive careOutcome studiesPalliative care

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