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Pediatric palliative care programs in children's hospitals: a cross-sectional national survey
Chris Feudtner1, James Womer, Rachel Augustin
1CHOP North, Room 1523, The Children's Hospital of Philadelphia, 34th and Civic Center Blvd, Philadelphia, PA 10194. feudtner@email.chop.edu.
Insights
Pediatric palliative care (PPC) programs are increasingly common in children's hospitals. However, there is significant variation in staffing, funding, and services offered, highlighting a need for standardized guidelines.
Area of Science:
- Healthcare Management
- Pediatrics
- Palliative Care
Background:
- Pediatric palliative care (PPC) programs provide comprehensive care for seriously ill children.
- The establishment of PPC programs in children's hospitals has grown, but data on their scope is limited.
Purpose of the Study:
- To assess the current landscape of pediatric palliative care programs in US children's hospitals.
- To understand the number, staffing, services, funding, and distribution of these programs.
Main Methods:
- A survey was distributed in 2012 to 226 hospitals identified by the National Association of Children's Hospitals and Related Institutions.
- Data collected included program existence, staffing, patient demographics, services, and financial support.
Main Results:
- 69% of responding hospitals (162 total) reported having a PPC program.
- Most programs offer inpatient services during weekdays and rely heavily on hospital funding.
- Program consults varied, correlating with hospital size and staff numbers.
Conclusions:
- PPC programs are prevalent but show considerable variability in staffing, funding, and consultation volume.
- Development of guidelines for PPC team composition, funding, and consultation standards is recommended to ensure quality care.
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 hospitals, 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 identified 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 programs 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 standards may be warranted to ensure the highest quality of PPC.
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