Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

Given the dismal prognosis faced by patients with malignant glioma, maintenance of an acceptable quality of life (QOL) is essential. Patients diagnosed with malignant glioma have been shown to experience a wide range of physical and psychosocial challenges including anxiety and depression,1–3 problems with memory and attention,4 fatigue and distress,5–7 and impaired quality of communication and relationships.6,8 However, self-reporting of such conditions by patients can be complicated by emotional and neurocognitive changes as well as by impaired language function. Accordingly, caregiver input regarding a patient's physical and mental functioning and overall QOL can be of great value to clinicians. Several studies have attempted to assess the degree to which caregiver evaluations of cancer patient QOL reflect patient self-reports.9–15 Results have suggested that caregiver assessments are comparable to patient assessments of physical functioning but are more divergent in psychosocial domains. Although the concordance of malignant glioma patient and caregiver symptom reports has been examined in a fairly large study,16 there is limited research focusing on the concordance of QOL evaluations for patients with malignant glioma. Accordingly, the primary purpose of this study was to investigate the concordance between malignant glioma patients and their caregivers on QOL assessments as measured by the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument. Further, constraints on physical, cognitive, and language functioning due the tumor or treatment place particular stresses on a patient's primary caregiver. A secondary objective of this study was to evaluate the burden experienced by caregivers of malignant glioma patients using the Caregiver Quality of Life Index-Cancer (CQOL-C) scale and to compare results with those previously reported for caregivers of non-glioma cancer patients, since little data currently exist.