title: Symptoms and management of pediatric patients with incurable brain tumors in palliative home care.
abstract: BACKGROUND
  Brain tumors have the highest disease-related mortality rate of all pediatric cancers. The goal of this study was to determine whether all children with incurable brain tumors cared for by a pediatric palliative care team in a home setting suffer from the same symptoms towards the end of their lives or whether there are differences between the tumor localizations with implications for palliative care.
  
  
  METHODS
  This study was conducted as a retrospective, single center chart review including all patients treated between January 1st 2000 and December 31st 2013.
  
  
  RESULTS
  70 children, adolescents and young adults were included in the analysis. Symptom burden was high with a mean number of symptoms of 7.2 per patient. 74% of the symptoms already existed one week before death. Within the last week of life, impaired consciousness (75.7%) most often occurred. Furthermore, symptoms considerably depended on tumor localization. Patients with supratentorial tumors presented more frequently with seizures (p < 0.05), coma (p < 0.01), nausea and emesis (p < 0.01). Ataxia (p < 0.001) occurred most frequently in infratentorial tumors and speech disturbances (p < 0.05), cranial nerve paralysis (p < 0.001), and tetraparesis (p < 0.001) in brain stem tumors. 84.3% of the patients needed analgesics, only 64.4% WHO class III analgesics. Anticonvulsants were given more often in supratentorial tumors (p < 0.01).
  
  
  CONCLUSIONS
  Caring for a dying child suffering from a brain tumor needs increased awareness of the neurological deterioration. The symptom pattern strongly depends on the tumor localization and significantly differs between supratentorial, infratentorial and brain stem tumors.
authors.affiliation: University of Dusseldorf, Medical Faculty, Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, Moorenstr. 5, 40225 Dusseldorf, Germany. Electronic address: michaela.kuhlen@med.uni-duesseldorf.de.
authors.forename: Michaela
authors.initials: M
authors.lastname: Kuhlen
authors.affiliation: University of Dusseldorf, Medical Faculty, Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, Moorenstr. 5, 40225 Dusseldorf, Germany.
authors.forename: Jessica
authors.initials: J
authors.lastname: Hoell
authors.affiliation: University of Dusseldorf, Medical Faculty, Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, Moorenstr. 5, 40225 Dusseldorf, Germany.
authors.forename: Stefan
authors.initials: S
authors.lastname: Balzer
authors.affiliation: University of Dusseldorf, Medical Faculty, Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, Moorenstr. 5, 40225 Dusseldorf, Germany.
authors.forename: Arndt
authors.initials: A
authors.lastname: Borkhardt
authors.affiliation: University of Dusseldorf, Medical Faculty, Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, Moorenstr. 5, 40225 Dusseldorf, Germany.
authors.forename: Gisela
authors.initials: G
authors.lastname: Janssen
mesh_terms: D000293:Adolescent; D001932:Brain Neoplasms / Q000150:complications* / Q000473:pathology* / Q000628:therapy*; D002648:Child; D005260:Female; D006699:Home Care Services; D006801:Humans; D008297:Male; D010166:Palliative Care / Q000379:methods*; D012189:Retrospective Studies; D055815:Young Adult
keywords: Children; Home care; Palliative care; brain tumors; pediatric