Publication
Initial pediatric palliative care provision in patients under 25 years of age classified in ACT/RCPCH group 4: a three-year multicenter retrospective study
Geffroy H, Saucier E, Serinet M, Plançon M, Tarot A, Ridley A · BMC Palliative Care · 2026
Background Pediatric palliative care (PPC) plays a crucial role in addressing the needs of children with life-limiting conditions and their families. However, gaps remain in understanding the care trajectories and optimal timing for PPC initiation among children with non-progressive but irreversible neurological conditions (Association for Children’s Palliative Care Classification Group 4, ACT-4). This retrospective multi-center study conducted in Ile-de-France aimed to characterize ACT-4 patients who received subspecialty PPC, the circumstances leading to PPC team involvement, and their initial intervention. Methods Data was collected from electronic medical records of three PPC teams (hospital and community based) between 2020 and 2022. Statistical analyses were performed to identify patterns and differences in care trajectories. Results A total of 126 ACT-4 patients under 25 years of age were included in the study. Predominant diagnosis were hypoxic/ischemic and epileptic encephalopathy with a median age at diagnosis of 0.5 months (interquartile range (IQR): 0–6 months). Median age at PPC initiation was 3.5 years (IQR 0.5–12.5 months) with about half of patients receiving intensive medical care for an acute clinical episode, most frequently for respiratory distress or neurological symptoms (status epilepticus/dystonicus). The most common indication for PPC referral was defining goals of care during a multidisciplinary team meeting, often leading to withholding/withdrawing treatment, followed by pain management. Community-based patients were often older (median age 6.9 years, IQR 0.7–14.8 years) and referred for end-of-life care, whereas hospital patients tended to be younger (median age 3 years, IQR 0.4–11.2 years) and referred for collegial goals-of-care and advance care planning discussions. One year after referral, nearly a third of patients had died, one third received palliative follow-up, and one third were not followed-up by PPC teams. Conclusion Despite early diagnosis as a neonate, specialized palliative care is often initiated during a later acute clinical episode. Advance care planning, decision-making, complex and/or refractory symptom burden, and care coordination require opening a space for interdisciplinary dialogue and thus are opportune moments to initiate PPC. Further qualitative studies exploring optimal referral time from families’ and healthcare providers’ viewpoints would be of interest.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.