Mapa zintegrowanej opieki nad padaczką związaną z guzami mózgu w włoskiej sieci ośrodków RIN-IRCCS
Mapping integrated care for brain tumour-related epilepsy in the Italian RIN-IRCCS network
W skrócie
Badanie pokazuje, że w dziesięciu włoskich specjalistycznych ośrodkach medycznych opieka nad pacjentami z padaczką spowodowaną guzami mózgu jest bardzo zróżnicowana i nie ma ujednoliconych schematów postępowania. Wszystkie ośrodki pracują zespołowo, ale brakuje im jednakowych zasobów, specjalistów (zwłaszcza tych pracujących z dziećmi) i dostępu do zaawansowanych badań (takich jak monitorowanie aktywności mózgu czy pomiary leków przeciwpadaczkowych). Autorzy rekomendują opracowanie wspólnych, ujednoliconych wytycznych, aby zapewnić wszystkim pacjentom wysokiej jakości i spójną opiekę medyczną.
Oryginalny abstract (angielski)
BACKGROUND: Brain tumour-related epilepsy is a frequent and disabling complication of primary and metastatic brain tumours, requiring multidimensional and coordinated management. However, specific guidelines and standardized care pathways for this condition are still lacking. This study aimed to assess the current organization of care for brain tumour-related epilepsy within the Italian Network of Neuroscience and Neuro-rehabilitation Research Institutes. METHODS: A national, multicentre survey was conducted across participating centres between April and June 2024, with follow-up validation in December 2025. The questionnaire investigated human resources, technological availability, clinical pathways, and management strategies. Data were analysed descriptively. RESULTS: Ten centres participated. All reported adopting a multidisciplinary approach, although with marked variability in team composition, expertise, and resources. Core specialists were available in most centres, while paediatric expertise was often lacking. Advanced neurophysiological monitoring and antiseizure medication level assessment were not uniformly accessible. Magnetic Resonance imaging was widely available, whereas Positron Emission Tomography was less consistently implemented. No centre had a dedicated clinical pathway for brain tumour-related epilepsy, despite the presence of pathways for brain tumours and epilepsy separately. Neuropsychological and comorbidity assessments were inconsistently integrated into care. CONCLUSIONS: These findings highlight significant heterogeneity in the management of brain tumour-related epilepsy, even in highly specialized settings. The development of dedicated, standardized clinical pathways is needed to harmonize care and improve patient outcomes.