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
Author Information
Justin N Baker: 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.
Deena R Levine: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
Pamela S Hinds: Department of Nursing Research and Quality Outcomes, Center for Translational Research, Children's National Health System, Washington, DC.
Meaghann S Weaver: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
Melody J Cunningham: Department of Pediatrics, University of Tennessee Health Science Center, Le Bonheur Children's Hospital, Memphis, TN.
Liza Johnson: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
Doralina Anghelescu: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
Belinda Mandrell: Division of Nursing Research, Department of Pediatric Medicine, St Jude Children's Research Hospital, Memphis, TN.
Deborah V Gibson: Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
Barbara Jones: School of Social Work, University of Texas, Austin, TX.
Joanne Wolfe: 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.
Chris Feudtner: Division of Pediatric Palliative Care, Children's Hospital of Philadelphia, Philadelphia, PA.
Sarah Friebert: Haslinger Division of Pediatric Palliative Care, Akron Children's Hospital, Akron, OH.
Brian Carter: Departments of Neonatology and Bioethics, Mercy Hospital Center and Clinics, Kansas City, KS.
Javier R Kane: 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.
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.
