title: End-of-life care in pediatric neuro-oncology.
abstract: BACKGROUND
  The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might have additional needs because of the presence of unique issues, such as neurological impairment and altered consciousness. Very few reports specifically concerning the EOL period in pediatric neuro-oncology are available.
  
  
  METHODS
  Among all patients followed at our center during the EOL, we retrospectively analyzed data from 39 children and adolescents with brain tumors, in order to point out on their peculiar needs.
  
  
  RESULTS
  Patients were followed-up for a median time of 20.1 months. Eighty-two percent were receiving only palliative therapy before death. Almost half the patients (44%) died at home, while 56% died in a hospital. Palliative sedation with midazolam was performed in 58% of cases; morphine was administered in 51.6% of cases. No patient had uncontrolled pain.
  
  
  CONCLUSIONS
  The EOL in children with advanced CNS cancer is a period of active medical care. Patients may develop complex neurological symptoms and often require long hospitalization. We organized a network-based collaboration among the reference pediatric oncology center, other pediatric hospitals and domiciliary care personnel, with the aim to ameliorate the quality of care during the EOL period. In our cohort, palliative sedation was widely used while no patients died with uncontrolled pain. A precise process of data collection and a better sharing of knowledge are necessary in order to improve the management of such patients.
authors.affiliation: Pediatric Oncohematology, Stem Cell Transplantation and Cell Therapy Division. A.O. Città della Salute e della Scienza - Ospedale Infantile "Regina Margherita", Turin, Italy.
authors.forename: Stefano Gabriele
authors.initials: SG
authors.lastname: Vallero
authors.forename: Stefano
authors.initials: S
authors.lastname: Lijoi
authors.forename: Daniele
authors.initials: D
authors.lastname: Bertin
authors.forename: Laura Stefania
authors.initials: LS
authors.lastname: Pittana
authors.forename: Simona
authors.initials: S
authors.lastname: Bellini
authors.forename: Francesca
authors.initials: F
authors.lastname: Rossi
authors.forename: Paola
authors.initials: P
authors.lastname: Peretta
authors.forename: Maria Eleonora
authors.initials: ME
authors.lastname: Basso
authors.forename: Franca
authors.initials: F
authors.lastname: Fagioli
mesh_terms: D000293:Adolescent; D016543:Central Nervous System Neoplasms / Q000628:therapy*; D002648:Child; D002675:Child, Preschool; D003907:Dexamethasone / Q000627:therapeutic use; D005260:Female; D006760:Hospitalization; D006801:Humans; D007223:Infant; D008297:Male; D010166:Palliative Care; D013727:Terminal Care
chemical_list: D003907:Dexamethasone
keywords: brain cancer; end-of-life; neuro-oncology; palliative care; pediatric oncology; supportive therapy