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Pediatric Palliative Care for Children with Progressive Non-Malignant Diseases
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Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies

Pediatric Advanced Care Team, Department of Paediatrics, Hospital for Sick Children, Toronto, ON M5G 1X8, Canada
Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON M5T 3M6, Canada
Adult and Child Consortium for Health Outcomes Research and Delivery Science, Children’s Hospital Colorado, Aurora, CO 80045, USA
Division of General Pediatrics, University of Colorado Anschutz Medical Campus, Aurora, CO 80045, USA
Center for Biobehavioral Health, The Research Institute at Nationwide Children’s Hospital, Columbus, OH 43205, USA
Departments of Pediatrics and Psychology, The Ohio State University, Columbus, OH 43210, USA
Department of Pediatrics, University of Washington School of Medicine; Cancer and Blood Disorders Center, Seattle Children’s Hospital, Seattle, WA 98105, USA
Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Seattle, WA 98101, USA
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON M5T 1P8, Canada
Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
Pediatric Advanced Care Team, The Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
Department of Pediatrics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA 19104, USA
Author to whom correspondence should be addressed.
Children 2018, 5(3), 32;
Received: 9 January 2018 / Revised: 13 February 2018 / Accepted: 16 February 2018 / Published: 26 February 2018
(This article belongs to the Special Issue Pediatric Palliative Care)
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery. View Full-Text
Keywords: pediatric palliative care; research methods; outcomes pediatric palliative care; research methods; outcomes
MDPI and ACS Style

Nelson, K.E.; Feinstein, J.A.; Gerhardt, C.A.; Rosenberg, A.R.; Widger, K.; Faerber, J.A.; Feudtner, C. Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies. Children 2018, 5, 32.

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