The Alliance Releases Pediatric Facts and Figures Report

ALEXANDRIA, Virginia—The National Alliance for Care at Home (the Alliance) announced it has published the 2025 Pediatric Facts and Figures, a report that provides an overview of pediatric palliative care and hospice in the United States and presents the results of a national survey of providers. This year’s report showed programs are expanding services and visibility, but access and program capacity differ based on geography, setting and payer environment.

The survey that informed the report had a response rate of 56% and yielded 295 entries representing distinct pediatric programs. Responses represent all 50 states and Washington, DC, and the survey was active from May through August of 2024. The report takes a close look at topics like pediatric patient characteristics, location and access to care, reimbursement for care, provider characteristics, barriers and facilitators to care and concurrent care.  

Palliative care is a core component of the care at home continuum, providing care that is patient-centered and interdisciplinary and offering pain and symptom management, support for all members of the family and a focus of quality of life as defined by the patient and family. While traditional hospice care is reserved for patients nearing the end of life, pediatric palliative care is unique in that it can be provided at any stage of a serious illness, alongside curative or active treatments. This distinction allows patients and families to benefit from comprehensive support much earlier in the disease journey, without having to forgo other medical care. The focus of this report is to highlight the role of pediatric palliative and hospice care in the U.S.

“Pediatric palliative and hospice care represents some of the most profound and important work happening in the care at home space, yet our data and understanding of the sector as a whole is limited,” said Jennifer Sheets, CEO of the Alliance. “The 2025 Pediatric Facts and Figures report gives our community a clearer picture of who is being served, where gaps remain and what providers need to deliver truly patient- and family-centered care during some of life’s most difficult moments. We look forward to continuing our focus on palliative care research and data sharing through our partnership with the Research Institute for Home Care and are grateful to the Alliance’s Pediatric Work Group for their work in bringing this report to life.”

Key takeaways of the report include:

• Pediatric hospice and palliative care is growing, but unevenly. Programs are expanding services and visibility, yet access and program capacity vary by geography, setting and payer environment.
• Need is high and resource intensity is substantial. Children with serious illness can require extensive, ongoing support; the report underscores the disproportionate cost and utilization burden (including the cited $82,000 average annual cost figure).
• Interdisciplinary care is the backbone of effective pediatric support. Strong programs integrate symptom management, communication, psychosocial/spiritual care and care coordination across settings.
• Reimbursement is a primary driver of what care can be delivered. Medicaid/CHIP is central, while private insurance coverage may be inconsistent and administratively complex, shaping staffing and service availability.
• Workforce constraints limit scalability. Shortages of pediatric- experienced hospice/palliative clinicians affect service reach, intensity and specialized offerings (including perinatal supports).
• Concurrent care is pivotal—and complicated. Even where coverage exists (e.g., 74% reporting coverage), real-world implementation is hindered by variability in definitions, payer rules and coordination demands.
• Progress depends on alignment across stakeholders. Clearer policies, sustainable reimbursement, workforce development and cross-system partnerships are key to improving access and continuity for children and families.

The Alliance and the Institute both said they remain committed to working together to engage with providers, policymakers and the public to build a greater understanding of pediatric palliative care and hospice. The 2025 Pediatric Facts and Figures report is available online.