• Rachel Thienprayoon, San Julian Mark Melissa M 2 Department of Pediatrics, Cancer and Blood Diseases Institute , Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio., and Daniel Grossoehme.
• 1 Division of Palliative Care, Department of Anesthesia, Cincinnati Children's Hospital Medical Center , Cincinnati, Ohio.
• J Palliat Med. 2018 Mar 1; 21 (3): 290-296.

BackgroundChildren 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.ObjectivesThis study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC).DesignMixed methods design.Setting/SubjectsProviders from the Ohio Pediatric Palliative Care and End-of-life Network.MeasurementsUsing a modified Delphi technique, providers were surveyed regarding the NCP quality domains for HPC.ResultsThere 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.ConclusionsAll 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.

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