Schischlevskij Pavel, Cordts Isabell, Günther René, Stolte Benjamin, Zeller Daniel, Schröter Carsten, Weyen Ute, Regensburger Martin, Wolf Joachim, Schneider Ilka, Hermann Andreas, Metelmann Moritz, Kohl Zacharias, Linker Ralf A, Koch Jan Christoph, Stendel Claudia, Müschen Lars H, Osmanovic Alma, Binz Camilla, Klopstock Thomas, Dorst Johannes, Ludolph Albert C, Boentert Matthias, Hagenacker Tim, Deschauer Marcus, Lingor Paul, Petri Susanne, Schreiber-Katz Olivia
Department of Neurology, Hannover Medical School, 30625 Hannover, Germany.
Department of Neurology, Klinikum Rechts der Isar, Technical University of Munich, 81675 Munich, Germany.
Brain Sci. 2021 Jun 4;11(6):748. doi: 10.3390/brainsci11060748.
Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients' informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers' burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients' CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs ( = 249) were collected. Patients' functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King's Stages for ALS. The caregivers' burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers' burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients' functional status (r = -0.555, < 0.001, 242). It was influenced by the CGs' own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], < 0.001), patients' wheelchair dependency (+9.30, 95% CI [5.94; 12.66], < 0.001) and was interrelated with the CGs' depression (r = 0.627, < 0.001, 234), anxiety (r = 0.550, < 0.001, 234), and poorer physical condition (r = -0.362, < 0.001, 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients' impairment in daily routine (r = -0.280, < 0.001, 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs' lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs' work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.
肌萎缩侧索硬化症（ALS）是一种致命的神经退行性疾病，会导致患者逐渐丧失自主能力并需要他人照料。这不仅影响患者自身，还会对患者的非正式照料者（CGs）的健康、个人生活和职业生活产生影响。这项多中心研究的巨大努力不仅在于评估照料者的负担并确定其预测因素，还在于深入了解ALS患者照料者的需求，并填补关于他们个人生活和工作生活的知识空白。通过使用标准化问卷，收集了患者及其主要非正式照料者（n = 249）的原始数据。使用巴氏指数、修订后的肌萎缩侧索硬化症功能评定量表（ALSFRS-R）和ALS的金斯分期来评估患者的功能状态和疾病严重程度。通过扎里特照料负担访谈（ZBI）记录照料者的负担。通过医院焦虑抑郁量表评估照料者的共病焦虑和抑郁情况。此外，欧洲五维度五水平量表评估了他们与健康相关的生活质量。照料者的负担较重（ZBI均值 = 26/88，0表示无负担，≥24表示负担很重），并且与患者的功能状态相关（r = -0.555，P < 0.001，n = 242）。照料负担受到照料者自身因照料而产生的心理健康问题的影响（+11.36，95%置信区间[6.84；15.87]，P < 0.001）、患者对轮椅的依赖程度（+9.30，95%置信区间[5.94；12.66]，P < 0.001），并且与照料者的抑郁（r = 0.627，P < 0.001，n = 234）、焦虑（r = 0.550，P < 0.001，n = 234）以及较差的身体状况（r = -0.362，P < 0.001，n = 237）相关。此外，女性照料者更常出现焦虑症状，这也与患者日常生活中的功能障碍相关（r = -0.280，P < 0.001，n = 169）。由于疾病严重程度增加以及自主性降低是照料者负担的主要预测因素，并且对照料者的生活、患者护理和支持性治疗产生了相关的（负面）影响，因此患者护理和支持性治疗应解决这一问题。此外，为了维护照料者的身心健康，新的护理理念必须兼顾两者，不仅关注患者，还要关注他们的照料者以及与性别相关的具体问题。由于ALS患者的照料也会通过限制照料者的工作生活和收入而显著影响社会经济地位，并且主要报告的需求是缺乏心理支持和繁琐的手续，因此照料者的状况需要更多关注。除了他们自身的多学科医疗和心理护理外，在护理和患者管理问题上还需要更多支持。
