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Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop

Journal title
Journal of pain and symptom management
Publication year
2019
Author(s)
Feudtner, C.; Rosenberg, A. R.; Boss, R. D.; Wiener, L.; Lyon, M. E.; Hinds, P. S.; Bluebond-Langner, M.; Wolfe, J.
Pages
909-917.e3
Volume
58
Number
5

CONTEXT: To dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the U.S. and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship. OBJECTIVES: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities. METHODS: The workshop focused on PPC research topics and methods, including outcomes measurement, qualitative inquiry, analyses of big data, prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report. RESULTS: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research on participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education. CONCLUSION: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.

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