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

Glioblastoma is the most common and aggressive primary malignant brain tumor in adults with an incidence of approximately 3.2/100 000 [1]. The mainstay of treatment for glioblastoma is surgical resection, followed by chemo- and radiotherapy. Despite combined therapy, the median survival for glioblastoma is about 1–2 years [2, 3] and 5-year survival rate at around 5–9% [1, 4, 5].

Patients with glioblastoma present with a variety of symptoms and signs, such as neurological deficits and epileptic seizures, cognitive problems and neuropsychiatric symptoms of anxiety and depression, caused by the tumor itself, tumor-related treatment, or a combination of these factors [6]. These symptoms may all have a negative effect on the health-related quality of life (HRQoL) [7, 8], leading to inactivity [7] and the ability to continue a normal working life [7, 9]. The patient’s accelerating symptoms may also affect the nearest relative’s HRQoL [10]. In studies comparing gender, female generally score lower HRQoL then men [11, 12]. In addition, the individual situation of the patient will be affected by the strains placed upon the family members by the disease and the altered roles within the family—with the relatives themselves being affected by the increased burden imposed upon them [7, 9, 13, 14]. To our knowledge no studies have examined the relationship between the experiences of patients and relatives HRQoL and emotional well-being—before surgery.

To optimize our current de facto palliative oncological care, and develop and implement useful support to promote well-being, information about baseline HRQoL, emotional well-being, and family relationships is necessary. Identifying potential problems at early stage, and addressing these appropriately, is essential and could—in the long run—improve the HRQoL and emotional well-being in this group of patients and their relatives.

It is important to address and fill out this knowledge gap of the relation between patients and relatives before surgery. Relatives are likely to play an essential role in the HRQoL and emotional well-being of the patients with glioblastoma, as well as being affected themselves by the changes caused by the disease. The aim of this study was to describe and compare the HRQoL and emotional well-being in patients with glioblastoma and their relatives before surgery.

In this study the mental HRQoL of patients with glioblastoma and their relatives were found to be connected to symptoms of anxiety in the respective individual. In addition, there were differences between the patients and relatives in terms of self-reported HRQoL and emotional well-being. Relatives scored worse for items covering mental HRQoL and reported more frequent symptoms of anxiety and depression than patients.

It is well known that HRQoL and emotional well-being deteriorate in patients with glioblastoma who have had—or are about to undergo—tumor treatment [7, 25, 26]. Anxiety and emotional wellbeing may be more skewed towards patients with major neurological deficits such as significant aphasia or a dominant side hemiparesis. However, this has not been analysed in the study. In this study, relatives reported worse mental states than patients, including worse scores for MCS, impaired mental health and more symptoms of depression and anxiety. It has previously been shown that relatives are a vulnerable group in terms of mental health, with the relatives’ anxiety being at its highest before chemoradiotherapy and remaining high over time [27]. Worse scores among relatives can be related to a deeper insight into the disease and its prognosis, the personality changes that patients undergo [28, 29], as well as the consequence of these combined factors on family life [27].

Other possible explanations for worse scores in the group of relatives might be uncertainty about the surgery, the fear of being forced to take care of the patient, or being left alone. These feelings can at the other hand also be mixed with feelings of gratitude and privilege of taking care of the patient [29, 30].

There was a relation between patients and relatives with regard to symptoms of anxiety and MCS. This indicates that if impaired mental HRQoL and/or anxiety are present in one group, there is a likelihood that the other group will experience anxiety and/or lower mental HRQoL. The results help to identify especially vulnerable persons, such as patients with comorbidities and patients that have relatives with symptoms of anxiety.

Little is known about how relatives and patients affect each other mentally, especially in case of a glioblastoma diagnosis. Although the notion of close relatives influencing each other seems intuitively an obvious, there are few data on this subject. A previous study did identify a relationship between male relatives and patients with cancer regarding their mental HRQoL. In the same study, however, no relationship was found between female relatives and patients with cancer in terms of mental HRQoL [31].

In the present study, female relatives scored worse levels than male relatives for vitality and social functioning in SF-36, and for symptoms of depression in HAD. Little is known about gender-related differences occurring with relatives of patients with glioblastoma, but it is known that females generally score lower HRQoL than men [11, 12], and it is therefore relevant to study. A previous study reported similar findings—with female relatives of patients with cancer scoring worse overall HRQoL than male relatives [31]. Regardless of whether or not gender is a contributing cause of the reported differences in HRQoL, our data show that relatives estimate themselves worse than patients. Compared with a normative database with selected age and gender-matched sample [19] patients included in our study have lower estimates in HRQoL. The fact that both patients and relatives have affected HRQoL already before surgery illustrates the importance of a person-centered support already early in health care.

Higher age can be an indirect factor that negatively affects HRQoL and emotional well-being. Although some studies indicate that elderly patients still benefit from treatment [32, 33], increasing age will increase the probability of comorbidity, which has a negative impact on mental HRQoL for patients. Thus, the present study has identified comorbidity as a factor contributing towards patients deteriorated mental HRQoL. However, since hypertension was the most common comorbidity it is not possible to ratiocinate too much. Likewise, at older age, lower physical HRQoL can be presumed in patients with glioblastoma and this can affect patients mental HRQoL.

As expected, patients scored lower physical HRQoL than their relatives. Physical impairment can be one of the symptoms of glioblastoma and decreased physical function in patients can affect relatives negatively. Relatives to patients with low functional status (WHO) had a higher risk of poor mental well-being. WHO was still a significant factor despite the fact that in the sample group there was a slightly better WHO than in the dropout group.

The relation between patients and their relatives in the present study suggests that a family serves as a unit and needs to be treated as such. Thus, the focus of care should not only be on the ill person, but also include the relative. For this, it will be important for the relatives to feel welcomed, acknowledged and listened to and be considered as an essential part of the family [34]. Furthermore, research needs to be done regarding interventions for relatives of patients with glioblastoma, on which the body of literature regarding brain tumors is small and inconclusive [35].

Therefore, in the care of seriously ill patients, person-centered care is preferred and in case there are close relatives, he or she should be valued as an important part of this care. The typically heavy workload and frenetic pace associated with an acute neurosurgical care unit may make it difficult to provide and maintain this particular type of care, but our data clearly point out the importance of support and attention for relatives already before surgery.

Glioblastoma is incurable and has a poor prognosis and treatment focus more on QoL for the remaining time, not only for the patient but also for the relatives. This study shows that patients’ and relatives’ emotional well-being are dependent on each other and this even before surgery. In the clinical situation, the propose is that patients and relatives are screened for quality of life and mental health before surgery, to design a support model for early interception and support to patients at risk and their respective relatives.

When a patient is presented with glioblastoma, the disease affects the entire family’s mental health and emotional well-being. This study confirms that HRQoL and emotional well-being are affected in both patients and relatives. In fact, the relatives are more vulnerable at the time point before surgery regarding mental health and emotional well-being than the patients themselves. The results emphasize the importance of providing support, not only for the patients, but also for their relatives, early on at the time point before surgery. It would be attractive if early support, focusing on the caregiver/relative, also benefit patients since close relatives are likely to play an essential role for the wellbeing of patients.

The strength of this study is the study design with a direct comparison between patients and relatives, allowing a family view that includes awareness of relatives’ well-being. To compare data between patients and relatives, well validated generic questionnaires as SF-36 and HADS were chosen. In future studies, it will be of interest to use disease-specific instruments, which however do not allow comparison of pair’s estimates as was the focus of the present study. From an ethical point of view, the number of instruments should also be minimized on already exposed groups. A further strength is that it focuses on an early time point—prior to surgery—since both patients and relatives are already affected at that point and probably need support other than what is currently provided—and indeed more of it.

Concerning limitations, further knowledge of the dynamics of patients’ and relatives’ HRQoL throughout the entire course of the disease would be highly valuable and follow-up studies will be conducted to this end. A relatively large drop-out, could be a limitation, demonstrated in the flow-chart. Although this is a limitation, it is important to study HRQoL issues in diseases like glioblastoma with short survival, which involve severe and disabling symptoms of cognitive decline, personality changes and neurological deficits—even if this leads to fewer participants and larger drop-out rates. A national population based study would of course be of value, but it was not possible to realize. Further, it would be of value to compare the results with the general population, but updated comparable data were not available. Another limitation is that data on education and cultural background are missing. It can be assumed that there may be different experiences depending on the relationship of the relatives to the patient, but due to small samples, these analyses could not be performed. It should be noted though that patients were asked to choose their closest relative, so even if it was not a partner living together with the patient, it was a person standing close to him/her.