Pediatric Palliative Care Programs in Children’ s Hospitals: A Cross-Sectional National Survey WHAT’S KNOWN ON THIS SUBJECT: Over the past 10 years, children’ s hospitals increasingly have established pediatric palliative care programs, but little is known about the prevalence of these programs or their geographic distribution, range of services offered, staff composition, or funding. WHAT THIS STUDY ADDS: Among the 162 hospitals that responded to this survey (71.7% response rate), 69% have a pediatric palliative care program, with substantial variation across programs in terms of how they are staffed and funded and what services they provide. abstract BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’ s hos- pitals, but little is known about their number, staff composition, services offered, sources of support, or national distribution. METHODS: In the summer of 2012, we surveyed 226 hospitals as iden- tified by the National Association of Children’ s Hospitals and Related Institutions. The survey instrument gathered data about whether their institution had a PPC program, and for hospitals with programs, it asked for a wide range of information including staffing, patient age range, services provided, and financial support. RESULTS: Of the 162 hospitals that provided data (71.7% response rate), 69% reported having a PPC program. The rate of new program creation peaked in 2008, with 12 new programs created that year, and 10 new programs in 2011. Most programs offer only inpatient services, and most only during the work week. The number of consults per year varied substantially across programs, and was positively associated with hospital bed size and number of funded staff members. PPC pro- grams report a high level of dependence on hospital funding. CONCLUSIONS: PPC programs are becoming common in children’ s hospitals throughout the United States yet with marked variation in how these programs are staffed, the level of funding for staff effort to provide PPC, and the number of consultations performed annually. Guidelines for PPC team composition, funding, and consultation stand- ards may be warranted to ensure the highest quality of PPC. Pediat- rics 2013;132:1063–1070 AUTHORS: Chris Feudtner, MD, PhD, MPH, a James Womer, BA, a,b Rachel Augustin, MPH, c Stacy Remke, MSW, d Joanne Wolfe, MD, MPH, e Sarah Friebert, MD, f and David Weissman, MD c a Pediatric Advanced Care Team, The Children’ s Hospital of Philadelphia, b Temple University School of Medicine, Philadelphia, Pennsylvania; c Center to Advance Palliative Care, New York, New York; d University of Minnesota School of Social Work, Minneapolis, Minnesota; e Division of Pediatric Palliative Care, Dana Farber Cancer Institute, and Department of Medicine Boston Children’ s Hospital, Massachusetts; and f Haslinger Family Pediatric Palliative Care Division, Akron Children’ s Hospital, Akron, Ohio KEY WORDS pediatric, palliative care, hospice care, hospital care, survey ABBREVIATIONS FTE—full-time equivalent PPC—pediatric palliative care Dr Feudtner collaborated in the conceptualization, design, and implementation of the survey study, supervised and assisted with the analysis, and drafted the initial manuscript; Mr Womer conducted the initial analysis and reviewed and revised the manuscript; Ms Augustin collaborated in the conceptualization, design, and implementation of the survey study, conducted the initial analysis, and reviewed and revised the manuscript; Ms Remke and Drs Wolfe, Friebert, and Weissman collaborated in the conceptualization, design, and implementation of the survey study and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted. www.pediatrics.org/cgi/doi/10.1542/peds.2013-1286 doi:10.1542/peds.2013-1286 Accepted for publication Sep 5, 2013 Address correspondence to Chris Feudtner, MD, PhD, MPH, CHOP North, Room 1523, The Children’ s Hospital of Philadelphia, 34th and Civic Center Blvd, Philadelphia, PA 10194. E-mail: feudtner@email.chop.edu PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2013 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose. FUNDING: Supported by a grant from the Cameron and Hayden Lord Foundation (New York, NY). POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose. The funding organization had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. PEDIATRICS Volume 132, Number 6, December 2013 1063 ARTICLE by guest on October 8, 2021 www.aappublications.org/news Downloaded from