Department of Neurosurgery, Erasmus MC - University Medical Center Rotterdam, Doctor Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands.
HMC, Department of Neurosurgery, The Hague, The Netherlands.
Acta Neurochir (Wien). 2024 Apr 3;166(1):166. doi: 10.1007/s00701-024-06037-7.
The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden.
21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers.
Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients' general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits.
In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.
健康相关生活质量（HRQoL）和认知能力是高级别胶质瘤（HGG）患者生存质量的重要指标。然而，关于长期幸存者及其照顾者的数据却很少。我们旨在调查长期幸存者的认知与 HRQoL 之间的相互作用、照顾者的评估以及对照顾者负担和压力的影响。
纳入 21 名长期 HGG（8 级 3 级和 13 级 4 级）幸存者（生存时间≥5 年）及其 15 名照顾者。采用标准化量表评估认知功能（言语记忆、注意力、执行功能和语言）、HRQoL、焦虑和抑郁、照顾者负担和压力。患者和/或其照顾者填写问卷。
中位生存时间为 12 年（3 级）和 8 年（4 级）。认知功能显著受损，个体间差异较大。患者的总体 HRQoL 不受影响，但所有功能量表均存在偏差。患者-代理人之间存在一致性。3 名患者（14%）存在焦虑或抑郁的迹象。三分之一的照顾者报告存在较高的照顾者负担或压力。注意力、执行功能、语言和/或言语记忆的测试分数与感知的整体健康状况、认知功能和/或沟通缺陷相关。认知缺陷与照顾者负担无关。
在长期 HGG 幸存者中，即使个体认知功能存在较大差异，维持 HRQoL 似乎也是可能的。因此，建议采用个性化方法来评估患者的认知障碍和 HRQoL 以及患者和照顾者的需求。
