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

Abstract

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.

Quality of life in patients with glioblastoma and their relatives

“…The results at baseline (pre‐surgery) have been described in our previous study 9 but are presented here for the sake of completeness, that is to compare HRQoL and psychological symptoms between patients and their relatives over the entire course of the disease. After patients and relatives were paired, the sample comprised 63 pairs (patients/relatives) pre‐surgery, 42 pairs three weeks post‐surgery, 32 pairs twelve weeks post‐surgery, 25 pairs six months post‐surgery, 12 pairs one year post‐surgery, 11 pairs eighteen months post‐surgery and 6 pairs two years post‐surgery.…”

“…Furthermore, patients scored worse physical and mental HRQoL than an age‐ and gender‐matched reference population. Patients and relatives estimated low HRQoL preoperatively 9 and throughout the disease trajectory up until two years post‐surgery. These results highlight the importance of support both before surgery and during the entire disease process.…”

“…In a previous study, we reported that relatives of patients with glioblastoma have worse mental HRQoL and more frequent symptoms of anxiety and depression prior to surgery than the patients 9 . Apart from studies on patients with malignant glioma (with WHO grade III and IV grouped together), longitudinal descriptions and comparisons of patients with glioblastoma and their relatives in the literature are sparse.…”

“…8,10 A low HRQoL score early after surgery is a known negative prognostic factor for survival. 7,8 Relatives of patients with glioblastoma report distress pre-surgery 9 and at the 2-month follow-up. 10 In a previous study, we reported that relatives of patients with glioblastoma have worse mental HRQoL and more frequent symptoms of anxiety and depression prior to surgery than the patients.…”

Shared decision-making in neurosurgery: a scoping review

“…They concluded that the capacity for consenting to medical treatment in patients with brain tumors may need additional assessment of cognitive abilities to test the ability to consent for both treatment and research. In these patients, the support of relatives is important, and information regarding possible treatment options is also of high relevance to relatives, who often feel their needs are unmet regarding communication and information [ 13 , 44 , 48 ]. Involving patients and relatives more in the care may increase the understanding and can perhaps lead to better treatment compliance and overall well-being.…”