Abstract
BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children. OBJECTIVES: This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC). DESIGN: Mixed methods design. SETTING/SUBJECTS: Providers from the Ohio Pediatric Palliative Care and End-of-life Network. MEASUREMENTS: Using a modified Delphi technique, providers were surveyed regarding the NCP quality domains for HPC. RESULTS: There was strong consensus on the applicability of each domain to the participants' practices (median scores ranged from 0.97 to 1.0 with interquartile ranges = 0). Consensus on the rank importance of the eight domains was not achieved. Qualitative data included challenges with NCP domain 3 (Psychological and Psychiatric Aspects of Care). It was recommended that titles should remain consistent with adult standards, but domain definitions should be broadened for pediatric HBHPC. Continuity and coordination of care should be added as a ninth domain of quality in pediatric HBHPC. CONCLUSIONS: All eight NCP domains were validated in pediatric HBHPC. A ninth domain, Continuity and Coordination of Care, was also added. Ranking the domains was not recommended as consensus indicated weighting them as equally integrated standards. Future studies are needed to evaluate parent- and patient-prioritized domains of quality in pediatric HBHPC and to validate and map pediatric-specific indicators to these domains.