Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: a systematic review.

Objectives: Standardised reporting of outcomes in neonatal palliative and/or end-of-life care would facilitate comparison of practice and lead to more informed decisions about practice. We systematically reviewed evidence evaluating outcomes currently used to characterise the clinical provision of palliative and/or end-of-life care in neonatal settings.

Methods: A systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines was undertaken using Ovid Medline, Ovid Embase, OVID PsycINFO, OVID MIDIRIS and EBSCOhost CINAHL. No date or language restrictions were used. Studies were included if they measured or reported outcomes related to the clinical practice of neonatal palliative care in a neonatal unit.

Results: Of 7998 records identified through database searching, 20 articles were included. Identified studies were retrospective chart reviews. No studies used standardised outcomes and all used proxy outcome measures. Results were organised according to the WHO domains of paediatric palliative care. All studies (n=20) reported documentation of physical symptoms and functional status (physical domain); six documented parental emotional and support needs (psychological domain); four reported sibling support and wider family presence (social and cultural domain), and three reported support from spiritual services (spiritual domain).

Conclusion: Despite neonatal death accounting for the largest category of child death under 5 years of age, there are no standardised outcomes from which to characterise or develop clinical practice. Developing a core outcome set for neonatal palliative and end-of-life care would ensure that services can be compared using reliably collected and collated data and help advance care in this area.