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

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.