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. 2015 Aug;167(2):467-70.e3.
doi: 10.1016/j.jpeds.2015.05.002. Epub 2015 May 28.

Research Priorities in Pediatric Palliative Care

Justin N Baker  1 , Deena R Levine  2 , Pamela S Hinds  3 , Meaghann S Weaver  2 , Melody J Cunningham  4 , Liza Johnson  2 , Doralina Anghelescu  2 , Belinda Mandrell  5 , Deborah V Gibson  2 , Barbara Jones  6 , Joanne Wolfe  7 , Chris Feudtner  8 , Sarah Friebert  9 , Brian Carter  10 , Javier R Kane  11
Affiliations

Research Priorities in Pediatric Palliative Care

Justin N Baker et al. J Pediatr. 2015 Aug.

Abstract

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.

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Conflict of interest statement

The authors declare no conflicts of interest

Figures

Figure
Figure
Flow chart of the Delphi technique.
See this image and copyright information in PMC

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