TY - JOUR
T1 - Research Priorities in Pediatric Palliative Care
AU - Baker, Justin N.
AU - Levine, Deena R.
AU - Hinds, Pamela S.
AU - Weaver, Meaghann S.
AU - Cunningham, Melody J.
AU - Johnson, Liza
AU - Anghelescu, Doralina
AU - Mandrell, Belinda
AU - Gibson, Deborah V.
AU - Jones, Barbara
AU - Wolfe, Joanne
AU - Feudtner, Chris
AU - Friebert, Sarah
AU - Carter, Brian
AU - Kane, Javier R.
N1 - Funding Information:
Supported by American Lebanese Syrian Associated Charities . The authors declare no conflicts of interest.
Publisher Copyright:
© 2015 Elsevier Inc.
PY - 2015/8/1
Y1 - 2015/8/1
N2 - 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.
AB - 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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U2 - 10.1016/j.jpeds.2015.05.002
DO - 10.1016/j.jpeds.2015.05.002
M3 - Article
C2 - 26028284
AN - SCOPUS:84937729169
SN - 0022-3476
VL - 167
SP - 467-470.e3
JO - Journal of Pediatrics
JF - Journal of Pediatrics
IS - 2
ER -