Abstract

BACKGROUND: End-of-life (EoL) symptoms of patients have not been prospectively assessed in patients with high grade glioma (HGG). The aim of this study was to understand symptom progression and to define the EoL trajectory in HGG to make recommendations on palliative care or hospice involvement. METHODS: Prospective single-center study assessing symptoms and quality of life of HGG patients failing therapy with bevacizumab, showing clinical and radiological progression, and with a Karnofsky Performance Status score(KPS) <60. Patients and caregivers were enrolled. MD Anderson Symptom Inventory Brain Tumor Module (MDASI-BT) and symptoms assessment was performed upon enrollment and bi-weekly thereafter by phone call. Follow-up continued until death. RESULTS: Data from 28 patient-caregiver dyads was available for interpretation. Fatigue, drowsiness, and concentration progressed significantly 12-14 weeks prior to death along with loss of appetite, change in bowel habits, and appearance. Seizures were rare but had severe impact if present. Remembering things, speaking and weakness was moderate at baseline and without significant progression. Loss of consciousness was reported in 19 patients with a median of 4 days (range 1-7) prior to death. Pain was mild throughout the disease course. Significant progressive interference in enjoyment of life, relationships, and work was observed. Hospice was initially contacted at a median of 3.5 weeks prior to death and enrollment took place within 1 week after initial contact in all but one patient. No patient received palliative care. All patients died under hospice care. DISCUSSION: This is the first prospective study of symptoms and quality of life in HGG patients. Our findings suggest that patients with HGG suffer from high morbidity in the EoL phase mainly due to fatigue, drowsiness, and concentration. Patients failing bevacizumab and presenting with a KPS ≤60 should be counselled about the possibility of hospice to assure proper symptom management and EoL decision making.

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