Identifying indicators of quality pediatric palliative care: A systematic review

Abstract

Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the quality of care provided to children with life-threatening conditions and their families. Objectives: We conducted a systematic review to identify structure, process and outcome indicators of quality palliative care for children with life-threatening conditions and their families, and evaluate how these indicators are measured. Methods: We conducted our search using three electronic databases (CINAHL, MEDLINE, Embase) and a combination of the following key word terms: palliative care, healthcare quality, and quality assessment / improvement / measurement / metrics or preferred practices. Results were limited to studies in children, aged 0-18 years. Book chapters, theses and conference abstracts were excluded. Titles and abstracts were reviewed for relevance, followed by full article review for all retained articles. Two reviewers were involved at each level of review. Results: After removal of duplicates, 5909 titles and abstracts were screened for relevance, 1322 full articles were reviewed, and 121 articles were included in the final review. Key indicators included: availability of specialised PPC services (including bereavement care); proportion of children suffering from a variety of symptoms; proportion of families with documented discussions of goals of care; proportion of children dying in their preferred location; and proportion of parents satisfied with PPC service provision. Conclusions: There are a number of indicators and associated measures for assessing the quality of pediatric palliative care, however further work is required to validate these indicators and identify additional outcome indicators. Identification of key quality indicators provides a foundation for critical validation work and assessment of the impact of interventions designed to improve the quality of pediatric palliative care.