Research Priorities in Pediatric Palliative Care.

TitleResearch Priorities in Pediatric Palliative Care.
Publication TypeJournal Article
Year of Publication2015
AuthorsBaker JN, Levine DR, Hinds PS, Weaver MS, Cunningham MJ, Johnson L, Anghelescu D, Mandrell B, Gibson DV, Jones B, Wolfe J, Feudtner C, Friebert S, Carter B, Kane JR
JournalJ Pediatr
Date Published08/2015

OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda.

STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus.

RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education.

CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.

Alternate JournalJ. Pediatr.
PubMed ID26028284
PubMed Central IDPMC4516589
Grant ListP30 CA021765 / CA / NCI NIH HHS / United States