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

Abstract

Background: Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers.

Methods: QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument.

Results: Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44-8.05) points higher than paired caregiver reports on the 200-point scale (P = .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P < .001).

Conclusions: Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted.

Keywords: CQOL-C; FACT-Br; QOL; caregiver; glioma.

Fig. 1.

Comparison of mean patient and caregiver FACT-Br and subscale scores by study visit. Error bars represent standard error of the mean. Abbreviations: BRCS, brain cancer subscale; EWB, emotional well-being; FWB, functional well-being; PWB, physical well-being; SWB, social well-being.

Fig. 2.

Bland-Altman plots for patient and caregiver FACT-Br and subscale evaluations. Dotted lines represent clinically significant differences, defined as one-half of the standard deviation of patient-reported scores. Abbreviations: BRCS, brain cancer subscale; EWB, emotional well-being; FWB, functional well-being; PWB, physical well-being; SWB, social well-being.