The Caregivers Perspective On The End-of-Life Phase of Glioblastoma Patients

ABSTRACT Objective Glioblastoma multiforme (GBM) still harbours an inevitably fatal prognosis. The specially course of this disease poses unique challenges in care provision to the relatives. We lack data about the caregiverś perspective on the end-of-life (EOL) phase of GBM patients to improve counseling and support. Methods In this retrospective study we included 52 caregivers of deceased GBM patients treated in two hospitals in Vienna, Austria. We used a specially developed questionnaire by the Medical University of Amsterdam to explore and document the last three months of living of GBM patients. Results Most of the included caregivers were the partners of the patients (88%) and two thirds were female. The most common symptom in GBM patients was fatigue (87%), followed by reduced consciousness (81%) and aphasia (77%). 22% of the patients were bedbound during their last three months increasing to 80% in the last week of life. 30% of the caregivers told that they felt incompletely informed for their task and about the illness of their loved one. They stated the quality of life (QOL) of the patients with 2.2 and their own with 2.8 on a scale of 1 to 7 whereas 7 displays the best possible answer. The majority of the patients (46%) died in hospitals and 38% at home, which was the most often expressed wish for place of death (45%) by patients. Regarding the caregiverś symptoms, sadness (90%), fear (69%), burnout (60%), less interest in others (54%) and irritation (42%) were the leading ones and did not differ significantly in-between the places of death. Conclusion The caregivers reported that their quality of life (QOL) was only slightly better than the QOL they attributed to the patients. About two thirds of the caregivers felt overstrained and stress thereby the urgent need for support and dedicated educational programs. Disclosure All authors have declared no conflicts of interest.