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Research Priorities in Pediatric Palliative Care
Justin N Baker1, Deena R Levine1, Pamela S Hinds2
1Department of Oncology and Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, TN.
The Journal of Pediatrics
|June 2, 2015
Summary
Pediatric palliative care (PPC) research priorities were identified through a consensus-based Delphi survey involving clinicians and parents. This work aims to guide future research and improve care for children and families.
Area of Science:
- Pediatric Palliative Care
- Health Services Research
- Clinical Research Prioritization
Background:
- Pediatric palliative care (PPC) requires a robust research agenda to enhance care quality.
- Identifying research priorities necessitates input from both clinicians and families.
- Previous research agendas may not fully reflect current needs in PPC.
Purpose of the Study:
- To establish a consensus on the highest priority research areas in pediatric palliative care.
- To synthesize the perspectives of diverse stakeholders, including PPC clinicians and parents.
- To inform the strategic direction of future PPC research funding and initiatives.
Main Methods:
- A modified Delphi online survey methodology was employed over four rounds.
- Initial research concepts were generated by 170 experts and 72 parents.
- Consensus was achieved through iterative rating and ranking of identified priorities.
Main Results:
- Over 3000 concepts were generated, refined into 78 priorities, and subsequently narrowed to 31 consensus priorities.
- A final consensus recognized 20 key research priorities.
- These priorities were thematically categorized into decision-making, care coordination, symptom management, quality improvement, and education.
Conclusions:
- A consensus-driven approach involving professionals and parents successfully identified critical PPC research priorities.
- Focusing on these priorities can help build a strong evidence base for PPC.
- Further research into PPC implementation and outcomes is crucial for improving care quality for children and their families.
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