Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden
Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden
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DOI：
10.1093/nop/npu004
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发表时间：
2014-06-01
影响因子：
2.7
通讯作者：
Raizer, Jeffrey J.
中科院分区：
文献类型：
--
作者：
Jacobs, Daniel I.;Kumthekar, Priya;Raizer, Jeffrey J.
背景资料。考虑到许多恶性胶质瘤患者经历的神经认知障碍，照顾者报告在评估这些患者的生活质量(QOL)时可能是至关重要的。在这项研究中，我们探索了主要照顾者对患者生活质量的评估是否与患者自我报告的生活质量一致，并量化了照顾者面临的负担。使用癌症治疗脑功能评估(FACT-BR)工具，由患者和主要照顾者在3次或3次以上的不同场合对45名患者的生活质量进行评估，并评估两份报告之间的一致性。照顾者负担使用照顾者生活质量指数-癌症(CQOL-C)工具进行测量。总体而言，患者和照顾者FACT-BR报告之间有很好的一致性(组内相关系数=0.74)。患者报告的FACT-BR得分比配对照顾者报告的200分高4.75分(95%CI，1.44-8.05)(P=0.008)；然而，这种差异并不具有临床意义。由CQOL-C测量的照顾者负担，在本研究中的照顾者显著高于先前报道的肺癌、乳腺癌或前列腺癌患者的照顾者(P<；.001)。尽管护理者对患者生活质量的评估与患者自我报告相比有微小的差异，但我们的结果表明，护理者评估可以作为患者报告的适当替代。我们的结果也说明了恶性胶质瘤患者的照顾者面临的特别沉重的负担。对这两个领域的进一步研究是有必要的。
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.