Chris Feudtner1, Abby R Rosenberg2, Renee D Boss3, Lori Wiener4, Maureen E Lyon5, Pamela S Hinds6, Myra Bluebond-Langner7, Joanne Wolfe8. 1. The Ingerman Center for Pediatric Palliative Care, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. Electronic address: feudtner@email.chop.edu. 2. Palliative Care and Resilience Program, Seattle Children's Research Institute, Seattle, Washington, USA; Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA. 3. Department of Pediatrics, Johns Hopkins School of Medicine and Berman Institute of Bioethics, Baltimore, Maryland, USA. 4. National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA. 5. Center for Translational Research, Children's National Health System, Washington, District of Columbia, USA; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, District of Columbia, USA. 6. Children's National Health System, Department of Nursing Science, Professional Practice & Quality, and the George Washington University School of Medicine and Health Sciences, Washington, District of Columbia, USA. 7. Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Institute of Child Health, University College London, London, United Kingdom; Department of Sociology, Anthropology, and Criminal Justice, Rutgers University, Camden, New Jersey, USA. 8. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.
Abstract
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.
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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