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.

Health-related quality of life and emotional well-being in patients with glioblastoma and their relatives.

PURPOSE: The health-related quality of life (HRQoL) for patients with glioblastoma is known to be largely affected. Little is known about the HRQoL for relatives and the relationship between these two. To optimize family care, such issues need to be addressed early on, preferably from the time of diagnosis. This study aimed to describe and compare the HRQoL of patients with glioblastoma and their relatives before surgery. METHODS: A prospective cohort study including 89 patients diagnosed with glioblastoma and their relatives. HRQoL (Short Form Health Survey, SF-36) and emotional well-being (hospital anxiety and depression scale, HADS) were analysed with descriptive, comparative and multivariable regression analyses. RESULTS: Relatives scored worse for mental HRQoL (p < 0.001) and for symptoms of anxiety (p < 0.001) and depression (p = 0.022) compared to patients. The multivariable regression showed an increased risk of affected mental HRQoL in relatives of patients with poor functional status (WHO) (p = 0.01) and higher levels in symptoms of anxiety (p = 0.03), or when relatives had low physical HRQoL themselves (p = 0.01). There was increased risk of affected mental HRQoL in patients with comorbidities (p = 0.003), and when the respective relative showed higher levels in symptoms of anxiety (p = 0.005). CONCLUSION: Relatives scored worse for mental HRQoL and emotional well-being than patients, suggesting that HRQoL in patients and relatives might be connected to symptoms of anxiety in the respective individual at disease onset. The results illustrate the need to screen HRQoL and emotional well-being in both patients and relatives from an early stage-before surgery.