Pediatric palliative care in practice: real-world service utilization and care pathways in a regional Italian health system

Abstract

Abstract The purpose of this study was to describe real-world pediatric palliative care (PPC) utilization and care pathways within a regional Italian health system and to compare the observed specialist PPC caseload with the expected regional need. This retrospective observational study included pediatric patients formally taken in charge by the tertiary-level PPC Hub Center at IRCCS Burlo Garofolo, Trieste, between January 2022 and December 2025. Electronic clinical records were reviewed to reconstruct demographic and clinical characteristics, technological dependency, healthcare contacts, home-based activities, territorial mobility, and expected regional PPC need. Among 159 screened patients, 91 met the inclusion criteria. Most patients were non-oncologic ( n = 80) and showed high clinical complexity and frequent technological dependency, with 29.7% requiring more than three medical devices. Median age was 6 years (IQR 1–12), foreign citizens accounted for 26.4% of the cohort, and overall mortality was 29.7%. Median healthcare utilization was 61 accesses per patient (IQR 35–97), with broad multidisciplinary involvement across hospital, outpatient, emergency, and home-based services. Care delivery was strongly centralized toward the tertiary PPC Hub Center. Observed specialist PPC coverage was 42.3% of the estimated regional specialist need, with lower coverage in more distant Local Health Authorities. Conclusion : Children receiving specialist PPC showed substantial clinical complexity, technological dependency, and intensive multidisciplinary healthcare use. Hub-centered pathways and the coverage gap support strengthening territorial capacity, proactive case identification, culturally sensitive family support, and integrated Hub-and-Spoke governance. What is Known: • Children needing PPC have complex, long-term needs and high healthcare utilization. • Access to specialist PPC remains uneven across Italian regions and care settings. What is New: • This regional real-world study reconstructs longitudinal PPC pathways across hospital, home, and territorial services. • Specialist PPC coverage reached 42.3% of estimated need, with marked LHA variability and hub-centered care.