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Palliative Care Programs in Children's Hospitals
Meaghann S Weaver1,2, Valerie K Shostrom3, Erica C Kaye4
1Pediatrics, University of Nebraska Medical Center, Omaha, Nebraska.
Insights
Pediatric Palliative Care (PPC) programs are present in 80% of surveyed US children
Area of Science:
- Pediatric Palliative Care
- Healthcare Access
- Hospital Operations
Background:
- Prevalence of Pediatric Palliative Care (PPC) programs in the US is not well-defined.
- Understanding the characteristics of hospitals with and without PPC programs is crucial for improving care access.
- Limited data exists on the integration of PPC with essential support services like hospice and respite care.
Purpose of the Study:
- To determine the prevalence of PPC programs across children's hospitals in the United States.
- To compare the operational environments of children's hospitals with and without PPC programs.
- To identify factors associated with the presence of PPC programs and their relation to support services.
Main Methods:
- Analysis of the 2020 Children's Hospital Association Annual Benchmark Report survey data.
- Inclusion of 148 hospitals from 50 states, representing a 64% response rate.
- Statistical comparison of hospitals with and without PPC programs across operational, missional, educational, and financial domains.
Main Results:
- 80% of surveyed hospitals reported having a PPC program.
- Free-standing children's hospitals and those with higher acuity populations were more likely to offer PPC.
- Over half of facilities lacked access to hospice, and 79% lacked respite care for children.
Conclusions:
- PPC, hospice, and respite services are not fully realized for many children and families in the US.
- Smaller, lower-resourced hospitals face significant challenges in establishing and sustaining PPC programs.
- Increased programmatic focus and advocacy are needed to expand access to quality PPC services.
Backgroung And Objectives:
This study determined the prevalence of PPC programs in the United States and compared the environment of children's hospitals with and without PPC programs.
Methods:
Analyses of the multicenter Children's Hospital Association Annual Benchmark Report 2020 survey for prevalence of PPC programs and association with operational, missional, educational, and financial domains.
Results:
Two hundred thirty-one hospitals received Annual Benchmark Report survey requests with 148 submitted (64% response rate) inclusive of 50 states. One hundred nineteen (80%) reported having a PPC program and 29 (20%) reported not having a PPC program. Free-standing children's hospitals (n = 42 of 148, 28%) were more likely to report the presence of PPC (P = .004). For settings with PPC programs, the median number of staffed beds was 185 (25th quartile 119, 75th quartile 303) compared with 49 median number of staffed beds for those without PPC (25th quartile 30, 75th quartile 81). Facilities with higher ratio of trauma, intensive care, or acuity level were more likely to offer PPC. Although palliative care was associated with hospice (P <.001) and respite (P = .0098), over half of facilities reported not having access to hospice for children (n = 82 of 148, 55%) and 79% reported not having access to respite care (n = 117 of 148).
Conclusions:
PPC, hospice, and respite services remain unrealized for many children and families in the United States. Programmatic focus and advocacy efforts must emphasize creation and sustainability of quality PPC programs in smaller, lower resourced hospitals.
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