• The Journal of pediatrics · Aug 2015

    Research Priorities in Pediatric Palliative Care.

    • Justin N Baker, Deena R Levine, Pamela S Hinds, Meaghann S Weaver, Melody J Cunningham, Liza Johnson, Doralina Anghelescu, Belinda Mandrell, Deborah V Gibson, Barbara Jones, Joanne Wolfe, Chris Feudtner, Sarah Friebert, Brian Carter, and Javier R Kane.
    • Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN. Electronic address: Justin.Baker@stjude.org.
    • J. Pediatr. 2015 Aug 1; 167 (2): 467-70.e3.

    ObjectiveTo 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 DesignA 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.ResultsA 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.ConclusionsThis 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.Copyright © 2015 Elsevier Inc. All rights reserved.

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