The impact of a high-grade glioma on everyday life: A systematic review from the patient’s and caregiver’s perspective

Abstract

Background

With poor prognosis and disabling symptomatology high-grade gliomas affect not only the patient but also the family.

Purpose

The aim of this systematic review is to explore the experiences and needs of patients with a high-grade glioma and their family caregivers.

Method

Based on literature search in six databases, sixteen qualitative studies, published between 2000 and 2010 and with mixed methodological quality, were included.

Results

For both patients and their caregivers the diagnosis is marked by shock and recognition of death. For patients, coping with restriction seems to be most difficult to deal with. Especially loss of autonomy is hard. For caregivers, neurocognitive symptoms and personality changes irreversibly change the relationship with the patient leading to caregivers expressing a sense of total responsibility. The experience of being a caregiver is described by positive as well as negative feelings. Both patients and caregivers describe the need for hope, support and information.

Conclusion

The review provides some relevant insight in the experiences and needs of patients with a high-grade glioma and their caregivers. The methodological limitations of the included studies, however, urge for more research to refine our understanding of patients’ and caregivers’ experiences and needs to better tune care to their needs.

Introduction

With an age-adjusted incidence rate of 4.15 per 100.000 person years, high-grade gliomas represent 21.6% of all reported brain tumors in the US (CBTRUS, 2004–2007). The five year survival of a patient with a glioblastoma is 9.8% (6.4–14) and the median survival is 14.6 months (95% CI 13.2–16.8) (Stupp et al., 2009). Current therapy comprises surgery, radiotherapy and/or chemotherapy.

Symptoms mostly depend on the area of the central nervous system that is affected and fluctuate as the disease progresses. High-grade glioma patients may have, to a greater or lesser extent and depending on both tumor size and location, following symptoms: headache, seizures, cognitive changes, memory loss, motor impairment, speech disorder, visual problems, personality changes, disturbance of consciousness, nausea/vomiting, sensory problems and papiloedema (Chang et al., 2005). Brain tumors clinically present with a symptomatology varying from grotesque disabilities to very subtle changes (Fox and Lantz, 1998).

A diagnosis of cancer and the effect of the extensive medical treatments have a great impact on life and quality of life. This is not different for brain tumor patients. Besides, a brain tumor has much in common with neurodegenerative disorders and can cause rapid physical, emotional and cognitive decline, ultimately evolving to the patients’ death (Fox and Lantz, 1998). On top of this, brain tumors are associated with social stigmatization, like many other cognitive and neurological diseases, which may result in more isolation and discrimination than in other cancer patients (Fox and Lantz, 1998, Janda et al., 2006).

Obviously, a brain tumor affects not only the patient but also his social environment. It is a family disease (Fox and Lantz, 1998). Caregivers’ distress is reflected in burden and depressive symptoms, both related to the reduced independence and neuropsychiatric symptoms of the patient (Sherwood et al., 2006, 2007). Compared with caregivers of other brain tumor patients, caregivers of patients with a glioblastoma have a worse quality of life (Janda et al., 2007) and may have more psychosocial needs because the disease process is faster and they have less time to adapt (Schubart et al., 2008). Arber et al. (2010a) report that emotional problems of caregivers of brain tumor patients are often not recognized.

Given the high levels of distress and burden of high-grade glioma patients and their caregivers, it is important to develop appropriate care services for these persons. Therefore specific information is required on their experiences and needs. The aim of this systematic review is to explore the experiences and the needs of patients with a high-grade glioma and their caregivers. The focus is twofold: How do patients with a high-grade glioma and their family caregivers experience the diagnosis, treatment, care and life with a brain tumor? And what are their needs with respect to care?