title: The caregivers' perspective on the end-of-life phase of glioblastoma patients.
abstract: Glioblastoma multiforme (GBM) still harbors a fatal prognosis. The involvement of the neurocognition and psyche poses unique challenges for care provision by relatives. We lack data about the caregivers' perspective on the end-of-life (EOL) phase of GBM patients to improve counseling and support. In this study we investigated the experiences of 52 caregivers of deceased GBM patients treated in Austria. We used a questionnaire developed by the University Medical Centre of Amsterdam for exploration of the EOL-phase in glioma patients. The caregivers (17 men, 34 women) completed the questionnaire in median three years after the patients' death. 29 % of caregivers reported that they felt incompletely prepared for their tasks, however, those with higher education levels felt significantly better informed. 29 % suffered from financial difficulties, which was associated with burnout (60 %) and reduced quality of life (QOL). The patients' most common symptoms reported by caregivers were fatigue (87 %), reduced consciousness (81 %) and aphasia (77 %). 22 % of patients were bedbound during their last three months increasing to 80 % in the last week of life. The reported QOL of caregivers was very low and did not differ between caregivers of patients, who died at home (40 %) and caregivers of patients, who died in hospital (46 %). The caregiver reported that their QOL was only slightly better than the QOL they attributed to the patients. Furthermore, the high frequency of financial difficulties, burnout symptoms and feelings of insufficient information emphasize the urgent need for support and training dedicated to caregivers.
authors: Department of Medicine I, Medical University of Vienna, Austria Comprehensive Cancer Center, Central Nervous System Tumors Unit (CCC-CNS), Währinger Gürtel 18-20, 1090 Vienna, Austria. birgit.flechl@gmx.at
authors: Birgit
authors: B
authors: Flechl
authors: Michael
authors: M
authors: Ackerl
authors: Cornelia
authors: C
authors: Sax
authors: Stefan
authors: S
authors: Oberndorfer
authors: Bernadette
authors: B
authors: Calabek
authors: Eefje
authors: E
authors: Sizoo
authors: Jaap
authors: J
authors: Reijneveld
authors: Richard
authors: R
authors: Crevenna
authors: Mohammad
authors: M
authors: Keilani
authors: Alexander
authors: A
authors: Gaiger
authors: Karin
authors: K
authors: Dieckmann
authors: Matthias
authors: M
authors: Preusser
authors: Martin J B
authors: MJ
authors: Taphoorn
authors: Christine
authors: C
authors: Marosi
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001932:Brain Neoplasms / Q000401:mortality / Q000523:psychology; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D005260:Female; D005909:Glioblastoma / Q000401:mortality / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology* / Q000706:statistics & numerical data