Zamanipoor Najafabadi Amir H, van der Meer Pim B, Boele Florien W, Taphoorn Martin J B, Klein Martin, Peerdeman Saskia M, van Furth Wouter R, Dirven Linda
Department of Neurosurgery, University Neurosurgical Center Holland, Leiden University Medical Center and Haaglanden Medical Center & Haga Teaching Hospitals, Leiden and The Hague, The Netherlands.
Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.
Neurooncol Adv. 2020 Dec 5;3(1):vdaa169. doi: 10.1093/noajnl/vdaa169. eCollection 2021 Jan-Dec.
Little is known about long-term caregiver burden in meningioma patients. We assessed meningioma caregiver burden, its association with informal caregiver's well-being and possible determinants.
In this multicenter cross-sectional study, informal caregivers completed the Caregiver Burden Scale (five domains and total score). Patients completed a disease-specific health-related quality of life (HRQoL) questionnaire focusing on symptoms (EORTC QLQ-BN20) and underwent neurocognitive assessment. Both groups completed a generic HRQoL questionnaire (SF-36) and the Hospital Anxiety, and Depression Scale. We assessed the association between caregiver burden and their HRQoL, anxiety and depression. Furthermore, we assessed determinants for the caregiver burden. Multivariable regression analysis was used to correct for confounders.
One hundred and twenty-nine informal caregivers were included (median 10 years after patients' treatment). Caregivers reported burden in ≥1 domain (34%) or total burden score (15%). A one-point increase in total caregiver burden score was associated with a clinically relevant decrease in caregiver's HRQoL (SF-36) in 5/8 domains (score range: -10.4 to -14.7) and 2/2 component scores (-3.5 to -5.9), and with more anxiety (3.8) and depression (3.0). Patients' lower HRQoL, increased symptom burden, and increased anxiety and depression were determinants for higher caregiver burden, but not patients' or caregivers' sociodemographic characteristics, patients' neurocognitive functioning, or tumor- and treatment-related characteristics.
Ten years after initial treatment, up to 35% of informal caregivers reported a clinically relevant burden, which was linked with worse HRQoL, and more anxiety and depression in both patients and caregivers, emphasizing the strong interdependent relationship. Support for meningioma caregivers is therefore warranted.
关于脑膜瘤患者长期的照料者负担，我们知之甚少。我们评估了脑膜瘤照料者的负担、其与非正式照料者幸福感的关联以及可能的决定因素。
在这项多中心横断面研究中，非正式照料者完成了照料者负担量表（五个领域及总分）。患者完成了一份针对症状的特定疾病健康相关生活质量（HRQoL）问卷（欧洲癌症研究与治疗组织QLQ-BN20）并接受了神经认知评估。两组均完成了一份通用的HRQoL问卷（SF-36）以及医院焦虑抑郁量表。我们评估了照料者负担与其HRQoL、焦虑和抑郁之间的关联。此外，我们评估了照料者负担的决定因素。采用多变量回归分析来校正混杂因素。
纳入了129名非正式照料者（患者治疗后中位数为10年）。照料者报告在≥1个领域存在负担（34%）或总负担得分（15%）。照料者总负担得分每增加1分，与照料者HRQoL（SF-36）在5/8个领域（得分范围：-10.4至-14.7）和2/2个分量表得分（-3.5至-5.9）出现具有临床意义的下降相关，并且与更多的焦虑（3.8）和抑郁（3.0）相关。患者较低的HRQoL、增加的症状负担以及增加的焦虑和抑郁是照料者负担较高的决定因素，但不是患者或照料者的社会人口学特征、患者的神经认知功能，或肿瘤及治疗相关特征。
初始治疗后10年，高达35%的非正式照料者报告了具有临床意义的负担，这与患者和照料者较差的HRQoL、更多的焦虑和抑郁相关，强调了这种强烈的相互依存关系。因此，有必要为脑膜瘤照料者提供支持。
