Publication
Epilepsy in Paediatric Palliative Care: Prevalence, Clinical Correlations and the Development of a Consensus-Based Seizure Management Protocol
Hizanu Dumitrache M, Salim C, Plesea-Condratovici A, Mindru D, Duceac Covrig M, Elkan E, Cristescu Budala C, Gurzu I, Moraru P, Matasaru M, Matei M, Duceac L · Medicina (Kaunas, Lithuania) · 2026
Abstract Background and Objectives: Seizures and epilepsy are common in children with life-limiting illnesses, particularly in the context of severe neurological impairment. However, data on the clinical profile of these patients in paediatric palliative care are limited, and the lack of standardised protocols adapted to this context represents a clinical challenge. To assess the prevalence of epilepsy and associated clinical characteristics in children receiving paediatric palliative care and to develop a clinical protocol for the management of seizures based on expert consensus. Materials and Methods: A retrospective observational study was conducted, based on the analysis of clinical data from children registered in a paediatric palliative care service (Lumina Association, Romania). Demographic, diagnostic, neurological status and anticonvulsant treatment data were collected. Based on the results obtained and the existing literature, a clinical protocol was developed using a modified Delphi method approach, involving a multidisciplinary panel of experts and two rounds of evaluation of clinical statements. Results: A total of 101 patients (54.5% boys and 45.5% girls) were included, with a mean age of 7.2 ± 4.7 years. Epilepsy was documented in 32.7% of patients and was significantly associated with a neurological diagnosis (p = 0.008), severe neurodevelopmental delay (p = 0.032) and severe motor impairment (p = 0.036). The Delphi process led to the validation of 13 clinical recommendations, the majority of which achieved a strong level of consensus (>85%). Conclusions: Epilepsy is common and closely associated with severe neurological impairment in paediatric palliative care. The integration of systematic neurological assessment and the implementation of a consensus-based clinical protocol can support a more structured approach to seizure management in paediatric palliative care.
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