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

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.

What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?

“…Previous studies prioritized areas for highquality PPHC@Home clinical care and research using Delphi methods with PPHC@Home stakeholders, including providers and parents. 18,20 Among toprated priorities were services, techniques, and resources for pain and symptom relief and psychological support for children and young adults. 18 Given limitations to Delphi-rating methodologies, including the limited ability to differentiate between similar rating scores 18 and concerns about stability of rating scores, 23 we do not know which of these care domains are most important in supporting children at home.…”

“…18 Given limitations to Delphi-rating methodologies, including the limited ability to differentiate between similar rating scores 18 and concerns about stability of rating scores, 23 we do not know which of these care domains are most important in supporting children at home. Although high-quality PPHC@Home encompasses the spectrum of care domains, 20,22 health care resources, particularly in the home and community setting, 7,8 are finite. Knowing, therefore, what parents value most could help guide allocation of these scarce resources, as well as future clinical and research efforts to measure and improve the quality of PPHC@Home.…”

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

“…This modified Delphi study was submitted to the Cincinnati Children's Hospital Medical Center Institutional Review Board and deemed exempt from IRB review (Study ID 2016-1354). As previously described, 5 the OPPEN email list includes pediatric providers of multiple professional roles from across the Ohio region. In the spring of 2017, OPPEN members were surveyed through email using a web-based platform (REDCap) 7 regarding definitions for the nine domains of quality HBHPC established previously 5 (Appendix 1).…”

“…As previously described, 5 the OPPEN email list includes pediatric providers of multiple professional roles from across the Ohio region. In the spring of 2017, OPPEN members were surveyed through email using a web-based platform (REDCap) 7 regarding definitions for the nine domains of quality HBHPC established previously 5 (Appendix 1). Survey results were analyzed by the research team using a modified Delphi technique with three iterations [8][9][10] to identify group consensus and minority opinions.…”

“…In 2017, OPPEN took the first step toward providing quality domains specific to pediatric HBHPC, establishing nine domains of high-quality care for pediatric HBHPC. 5 These domains validated the eight NCP domains of quality HPC for applicability to children receiving HBHPC, and augmented them with the addition of a ninth domain of ''Coordination of Care.'' 6 This study is the next step in the development of these domains.…”