title: Symptoms and medication management in the end of life phase of high-grade glioma patients.
abstract: During the end of life (EOL) phase of high-grade glioma (HGG) patients, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible. In this study, we evaluated the prevalence of symptoms and medication management in HGG patients during the EOL phase. We analyzed disease-specific symptoms, general EOL symptoms, symptom frequency, and medication use at 3 months and 1 week before death in a cohort of 178 HGG patients, based on questionnaires completed by physicians responsible for EOL care. In addition, information on patient's perceived quality of care (QOC) was derived from 87 questionnaires completed by patient's relatives. Somnolence, focal neurological deficits and cognitive disturbances were the most prevalent symptoms during the EOL phase. Overall, disease-specific symptoms occurred more often than general EOL symptoms at both 3 months and 1 week before death. Somnolence and/or dysphagia were present in 81 % of patients whose medication was withdrawn and 96 % of patients in whom antiepileptic drugs (AEDs) were withdrawn. One week before death, 65.9 % of patients with high symptom frequency experienced good QOC, compared to 87.5 % of patients with low symptom frequency (p = 0.032). Disease-specific symptoms are the main concern in EOL care for HGG patients. Somnolence and dysphagia may hamper the regular oral administration of drugs, and particularly AEDs, during the EOL phase. High symptom frequency at 1 week before death negatively affects patient's perceived QOC.
authors.affiliation: Department of Neurology, VU University Medical Center, PO Box 7057, 1007 MB, Amsterdam, The Netherlands, j.koekkoek@vumc.nl.
authors.forename: J A F
authors.initials: JA
authors.lastname: Koekkoek
authors.forename: L
authors.initials: L
authors.lastname: Dirven
authors.forename: E M
authors.initials: EM
authors.lastname: Sizoo
authors.forename: H R W
authors.initials: HR
authors.lastname: Pasman
authors.forename: J J
authors.initials: JJ
authors.lastname: Heimans
authors.forename: T J
authors.initials: TJ
authors.lastname: Postma
authors.forename: L
authors.initials: L
authors.lastname: Deliens
authors.forename: R
authors.initials: R
authors.lastname: Grant
authors.forename: S
authors.initials: S
authors.lastname: McNamara
authors.forename: G
authors.initials: G
authors.lastname: Stockhammer
authors.forename: E
authors.initials: E
authors.lastname: Medicus
authors.forename: M J B
authors.initials: MJ
authors.lastname: Taphoorn
authors.forename: J C
authors.initials: JC
authors.lastname: Reijneveld
mesh_terms: D001932:Brain Neoplasms / Q000453:epidemiology* / Q000473:pathology / Q000503:physiopathology / Q000628:therapy*; D015331:Cohort Studies; D005260:Female; D005910:Glioma / Q000453:epidemiology* / Q000473:pathology / Q000503:physiopathology / Q000628:therapy*; D006801:Humans; D008297:Male; D008875:Middle Aged; D060787:Neoplasm Grading; D010465:Perception; D015995:Prevalence; D011787:Quality of Health Care; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods*