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.

Glioblastoma is the most aggressive and most common malignant brain tumour that affects adults. The mean age at diagnosis is around 65 years old and the incidence rate is 3.23 cases per 100,000. The average life expectancy is 10-15 months 1-4 and the estimated 2-year survival rate is 8%-25%. 2,4,5 Glioblastoma affects many aspects of a person's life and causes a variety of progressive, and usually concurrent, symptoms such as headache, hemiparesis, cognitive problems, personality changes and communication problems. 6 The complexity of symptoms and problems can have a negative impact on the health-related quality of life (HRQoL)-not only that of patients, but also relatives. 7,8 Consequently,

BACKGROUND Glioblastoma is the most common malignant brain tumor in adults and also the most aggressive one. At present, there is only palliative treatment available. The aim of this study is to investigate the HRQoL and emotional well-being of patients with glioblastoma by surveying them and their relatives from a time point before surgery until 2 years later. MATERIAL AND METHODS Patients and their relatives answered the validated questionnaires SF-36 and HADS at several time points: preoperatively, at 3 weeks postoperatively, at 12 weeks postoperatively, at 6 months postoperatively, at 1 year postoperatively, at 1.5 years postoperatively, and at 2 years postoperatively. At baseline, the paired patients and their relatives came to consist of 63 patients and 63 relatives. Descriptive statistics and the Wilcoxon signed-rank test were used. RESULTS Relatives scored more symptoms of anxiety than patients on all occasions except at 1.5 years postoperatively, with the largest significance preoperatively with p&lt;0.001 and at 3 weeks postoperatively with p&lt;0.001. 50% or more of the relatives reported the presence of symptoms of anxiety on all measured occasions. Furthermore, relatives scored worse for the SF-36 mental component summary (MCS) on all occasions except at 1.5 years postoperatively. Patients scored the SF-36 physical component summary (PCS) worse than the relatives on all measured occasions e.g., preoperatively p&lt;0.001, at 3 weeks postoperatively p&lt;0.001, at 12 weeks postoperatively p&lt;0.001 and at 6 months postoperatively p&lt;0.001. A comparison was also made between patients’ PCS and MCS with an age and gender matched population, patients scored MCS significantly worse than the general population preoperatively p&lt;0.001 with effect size r=0.5, at 3 weeks postoperatively p&lt;0.001with effect size r=0.5 and at 1.5 years postoperatively p=0.013 with effect size r=0.6. CONCLUSION The comparison between the HRQoL and emotional well-being of patients with glioblastoma and their relatives from presurgery to one and a half years postsurgery shows that patients on most occasions scored worse physical HRQoL and that relatives mostly scored worse mental HRQoL and emotional well-being. When comparing the patients in the present study with an age and gender matched reference population, it was found that the patients with glioblastoma scored worse HRQoL than the reference population.