title: Research Priorities in Pediatric Palliative Care.
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.
  
  
  METHODS
  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.
authors.affiliation: 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.
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
authors.affiliation: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
authors.forename: Deena R
authors.initials: DR
authors.lastname: Levine
authors.affiliation: Department of Nursing Research and Quality Outcomes, Center for Translational Research, Children's National Health System, Washington, DC.
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.affiliation: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
authors.forename: Meaghann S
authors.initials: MS
authors.lastname: Weaver
authors.affiliation: Department of Pediatrics, University of Tennessee Health Science Center, Le Bonheur Children's Hospital, Memphis, TN.
authors.forename: Melody J
authors.initials: MJ
authors.lastname: Cunningham
authors.affiliation: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
authors.forename: Liza
authors.initials: L
authors.lastname: Johnson
authors.affiliation: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
authors.forename: Doralina
authors.initials: D
authors.lastname: Anghelescu
authors.affiliation: Division of Nursing Research, Department of Pediatric Medicine, St Jude Children's Research Hospital, Memphis, TN.
authors.forename: Belinda
authors.initials: B
authors.lastname: Mandrell
authors.affiliation: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
authors.forename: Deborah V
authors.initials: DV
authors.lastname: Gibson
authors.affiliation: School of Social Work, University of Texas, Austin, TX.
authors.forename: Barbara
authors.initials: B
authors.lastname: Jones
authors.affiliation: Division of Pediatric Palliative Care, Department of Psychosocial and Palliative Care, Dana-Farber Cancer Institute, and Department of Medicine, Boston Children's Hospital, Boston, MA.
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
authors.affiliation: Division of Pediatric Palliative Care, Children's Hospital of Philadelphia, Philadelphia, PA.
authors.forename: Chris
authors.initials: C
authors.lastname: Feudtner
authors.affiliation: Haslinger Division of Pediatric Palliative Care, Akron Children's Hospital, Akron, OH.
authors.forename: Sarah
authors.initials: S
authors.lastname: Friebert
authors.affiliation: Departments of Neonatology and Bioethics, Mercy Hospital Center and Clinics, Kansas City, KS.
authors.forename: Brian
authors.initials: B
authors.lastname: Carter
authors.affiliation: Department of Pediatrics, McLane Children's Hospital and Clinics, Baylor Scott & White Health, and Texas A&M Health Science Center College of Medicine, Temple, TX.
authors.forename: Javier R
authors.initials: JR
authors.lastname: Kane
mesh_terms: D001291:Attitude of Health Personnel; D003697:Delphi Technique; D006801:Humans; D010166:Palliative Care; D010290:Parents / Q000523:psychology; D010372:Pediatrics; D012106:Research; D014481:United States