Quality of life in patients with glioblastoma and their relatives

OBJECTIVES: Glioblastoma is the most aggressive primary brain tumour in adults. The rapid decline of physical and cognitive functions is likely to affect patients and relatives during the entire course of disease. The aim of this study was to describe and compare (a) health‐related quality of life (HRQoL) and psychological symptoms between patients with glioblastoma and their relatives, and (b) HRQoL between patients and a general population over time. METHODS: At baseline, 63 patients and 63 relatives were included. The participants completed the Short Form Health Survey (SF‐36) and the Hospital Anxiety and Depression scale (HADS) at seven different occasions from pre‐surgery until two years post‐surgery. A comparison of SF‐36 was made between patients and an age‐ and gender‐matched control group. Descriptive analysis, effect size and Wilcoxon signed‐rank test were used. RESULTS: Relatives scored lower health‐related quality of life (HRQoL) and higher symptoms of anxiety than patients, whilst patients scored worse in the physical parts of the SF‐36. Three weeks post‐surgery, relatives scored their lowest HRQoL and had the highest risk of anxiety symptoms. Comparing patients with controls, the patients rated worse in both the mental and physical component summaries in HRQoL at most time points. CONCLUSION: Both patients and relatives showed deterioration of HRQoL. In addition, relatives showed high frequency of anxiety symptoms. Our data reveal that relatives of patients with glioblastoma need attention throughout the disease trajectory and they also need support at the right time point.