BACKGROUND Glioblastoma is an incurable disease with a poor prognosis. For caregivers of people with glioblastoma, the burden of care can be high. Patients often present with different clinical characteristics, which may impact caregiver burden in different ways. This study aimed to evaluate associations between patient clinical characteristics and caregiver burden/quality of life (QoL). METHODS Caregiver-patient dyads were enrolled at 7 academic cancer centers in the United States. Eligible caregiver participants were self-reported as the primary caregiver of an adult living with glioblastoma and completed a caregiver burden survey. Eligible patients were age ≥ 18 years at glioblastoma diagnosis and alive when their respective caregiver entered the study, with the presence of cognitive dysfunction confirmed by the caregiver. Data were analyzed with descriptive statistics and multivariable analyses. RESULTS The final cohort included 167 dyads. Poor patient performance status resulted in patient difficulty with mental tasks, more caregiving tasks, and increased caregiving time. Language problems were reported in patients with left-sided lesions. Patient confusion was negatively associated with all caregiver domains: emotional health, social health, general health, ability to work, confidence in finances, and overall QoL. Better caregiver QoL was observed in patients with frontal lobe lesions versus non-frontal lobe lesions. CONCLUSION This study reinforced that patient performance status is a critical clinical factor that significantly affects caregiver burden, caregiving tasks, and caregiver time. Additionally, patient confusion affects multiple facets of caregiver burden/QoL. These results could be used to support guided intervention for caregiver support, customized to the patient experience.

中文翻译：

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胶质母细胞瘤患者的治疗和临床特征导致的照顾者负担。

背景胶质母细胞瘤是一种预后不良的不治之症。对于胶质母细胞瘤患者的护理人员来说，护理负担可能很高。患者通常具有不同的临床特征，这可能以不同的方式影响护理人员的负担。本研究旨在评估患者临床特征与护理人员负担/生活质量 (QoL) 之间的关联。方法 在美国的 7 个学术癌症中心招募了看护者-患者二人组。符合条件的看护者参与者自我报告为成年胶质母细胞瘤患者的主要看护者，并完成了看护者负担调查。符合条件的患者在胶质母细胞瘤诊断时年龄≥ 18 岁，并且在他们各自的护理人员进入研究时还活着，并且由护理人员确认存在认知功能障碍。通过描述性统计和多变量分析对数据进行分析。结果 最终队列包括 167 对。较差的患者表现状态导致患者难以完成心理任务、更多的护理任务和增加的护理时间。据报道，左侧病变患者存在语言问题。患者的困惑与所有护理人员领域都呈负相关：情绪健康、社会健康、一般健康、工作能力、财务信心和整体生活质量。与非额叶病变相比，在额叶病变患者中观察到更好的看护者 QoL。结论 本研究强调，患者体能状态是一个关键的临床因素，它会显着影响护理人员的负担、护理任务和护理人员的时间。此外，患者的困惑会影响护理人员负担/QoL 的多个方面。这些结果可用于支持针对护理人员支持的指导干预，根据患者体验进行定制。