The Quality of Life of Patients with Malignant Gliomas and Their Caregivers

ABSTRACT

The grim prognosis that accompanies a diagnosis of a malignant glioma affects quality of life (QOL) as patients attempt to adapt to overwhelming losses. Caregivers also experience negative changes in QOL as responsibilities grow. This pilot study measured the QOL of patients with malignant gliomas prior to tumor progression and the QOL of their caregivers. It examined negative and positive factors that impacted the QOL while highlighting positive factors often overlooked in brain tumor QOL research. Standardized QOL questionnaires and focus groups were utilized. Patients experienced distress in the domains of physical, psychological, and social QOL but in all four of the QOL domains there were also positive outcomes. Caregiver data demonstrated mostly positive outcomes in the four QOL domains except for loved one's declining health and fear that the loved one would die.

KEYWORDS:

• Gliomas
• quality of life
• caregivers
• patients

The authors express gratitude to the Brain Tumor Network for sponsoring this study. The authors thank all the patients and caregivers who took the time and energy to participate in this study with the hope of helping others.