Defining Provider-Prioritized Domains of Quality in Pediatric Home-Based Hospice and Palliative Care: A Study of the Ohio Pediatric Palliative Care and End-of-Life Network.

Abstract

In 2017, the Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) published nine domains of high-quality care for pediatric home-based hospice and palliative care (HBHPC). Eight domains established by the National Consensus Project (NCP) were validated for pediatric HBHPC, and a ninth domain of "Continuity and Coordination of Care" was added. The aim of this study was to establish definition criteria for each of these domains. Using a modified Delphi technique, providers from the OPPEN were surveyed regarding definitions drawn from the NCP domain criteria. For the ninth domain, new definition criteria were generated de novo based on qualitative responses. Definition criteria were established for the nine domains of quality in HBHPC previously identified. In the course of analysis, Bereavement Care was established as a 10th domain of quality, and definition criteria generated. This is the first study to define domains of quality for pediatric HBHPC, and the second to leverage the infrastructure of a pediatric HPC statewide consortium toward this work. Future studies are needed to establish parent and patient-prioritized domains of quality in pediatric HBHPC, and to map indicators validated in pediatrics to these domains.