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, Javier R. Kane

Research output: Contribution to journalArticle

34 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)467-470.e3
JournalJournal of Pediatrics
Volume167
Issue number2
DOIs
StatePublished - Aug 1 2015
Externally publishedYes

Fingerprint

Palliative Care
Pediatrics
Consensus
Research
Parents
Quality of Health Care
Quality Improvement
Decision Making
Education

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

Cite this

Baker, J. N., Levine, D. R., Hinds, P. S., Weaver, M. S., Cunningham, M. J., Johnson, L., ... Kane, J. R. (2015). Research Priorities in Pediatric Palliative Care. Journal of Pediatrics, 167(2), 467-470.e3. https://doi.org/10.1016/j.jpeds.2015.05.002

Research Priorities in Pediatric Palliative Care. / Baker, Justin N.; Levine, Deena R.; Hinds, Pamela S.; Weaver, Meaghann S; Cunningham, Melody J.; Johnson, Liza; Anghelescu, Doralina; Mandrell, Belinda; Gibson, Deborah V.; Jones, Barbara; Wolfe, Joanne; Feudtner, Chris; Friebert, Sarah; Carter, Brian; Kane, Javier R.

In: Journal of Pediatrics, Vol. 167, No. 2, 01.08.2015, p. 467-470.e3.

Research output: Contribution to journalArticle

Baker, 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 2015, 'Research Priorities in Pediatric Palliative Care', Journal of Pediatrics, vol. 167, no. 2, pp. 467-470.e3. https://doi.org/10.1016/j.jpeds.2015.05.002
Baker JN, Levine DR, Hinds PS, Weaver MS, Cunningham MJ, Johnson L et al. Research Priorities in Pediatric Palliative Care. Journal of Pediatrics. 2015 Aug 1;167(2):467-470.e3. https://doi.org/10.1016/j.jpeds.2015.05.002
Baker, Justin N. ; Levine, Deena R. ; Hinds, Pamela S. ; Weaver, Meaghann S ; Cunningham, Melody J. ; Johnson, Liza ; Anghelescu, Doralina ; Mandrell, Belinda ; Gibson, Deborah V. ; Jones, Barbara ; Wolfe, Joanne ; Feudtner, Chris ; Friebert, Sarah ; Carter, Brian ; Kane, Javier R. / Research Priorities in Pediatric Palliative Care. In: Journal of Pediatrics. 2015 ; Vol. 167, No. 2. pp. 467-470.e3.
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