Primary palliative care integrated model in paediatric ICU: an international cross-sectional study

Abstract

Objectives: Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary paediatric palliative care (PPC), in which either approach varies depending on the disease trajectory and is provided by the critical care team, might be a fundamental component of the best available standard of care for patients with life-threatening conditions. The objective of this study is to assess how PICUs around the world, implement an IMOC.

Methods: International multicentre cross-sectional observational study. Data was gathered from 34 PICUs from 18 countries in the Americas, Europe, Asia and Africa. Provision of primary PPC was studied for each child admitted at the PICU. We evaluated score differences in each domain of the Initiative for Paediatric Palliative Care (IPPC) curriculum with multilevel generalised linear models.

Results: High-income country (HIC) units made up 32.4% of the sample, upper-middle income countries (UMICs) 44.1%, lower-middle income/lower income countries (LMIC/LICs) 23.5%. HICs had four statistically significantly higher IPPC scores compared with UMICs (domains: 1 holistic care; 2 family support, 3B family involvement; 6B grief/bereavement healthcare provider support) and two compared with LMIC/LICs (domains: 6A grief/bereavement family support; 6B grief/bereavement healthcare provider support).HICs had a statistically significant overall higher IPPC score than UMICs. Adjusting for patient/centre characteristics, shorter shifts and multiple comorbidities were associated with higher IPPC scores.

Conclusions: All centres offered some PPC provision and partially applied an IMOC. These results are encouraging, however, differences related to income and patients/unit evidence opportunities for improvement.

Trial registration number: ISRCTN12556149.

Keywords: communication; cultural issues; education and training; hospital care; paediatrics; service evaluation.