Austrian Patients with Glioblastoma Multiforme and Their Families: Socioeconomic Aspects

European Association of NeuroOncology Magazine 2013; 3 (2): 46-48

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Keywords: caregiver burden,  glioblastoma,  Tumor,  working situation

Patients with glioblastoma multiforme (GBM) are still confronted with an incurable cancer disease affecting not only their body but also their personality and cognition. We present recent Austrian studies performed at the Medical University of Vienna on GBM patients dealing with socio-economic outcomes. By analyzing quality of life (QOL), performance status, living and working situations, muscular strength of subsets of GBM patients, as well as satisfaction with the care and the end-of-life (EOL) situation of GBM patients of their primary caregivers, we tried to assess the impact of glioblastoma on patients and their families. We found that GBM long-term survivors (LTS) were mainly independent in their activities of daily living and mostly also in instrumental activities of daily living, but showed some moderate cognitive deficits and suffered from financial difficulties. Only a minority of GBM LTS was able to stay in their respective jobs. Even with adolescent and young adult (AYA) patients diagnosed with GBM before 40 years only 1/3 succeeded in staying employed after the diagnosis of GBM. Near half of the AYA patients returned to the household of their parents, which reflects their loss of independence. Moreover, we found that patients with GBM present a significant loss of strength in the proximal musculature of the legs, impairing their ability of climbing stairs and walking very early in the disease course. The complex patterns of physical, neurological, and cognitive impairments in GBM cause their needs for support starting very early in the disease. Family members become caregivers and are confronted with challenging life-changing situations. Thus, it is not surprising that family caregivers feel overstrained. We found that families with lower incomes and lower education levels showed higher distress levels as well as less satisfaction with the care of the patient, EOL care, and a worse bereavement adjustment. As a conclusion, in studies focusing on QOL and socio-economic impact of GBM we found an unmet need for support and information of patients and their caregivers.