Heine Josephine, Boeken Ole Jonas, Rekers Sophia, Wurdack Katharina, Prüss Harald, Finke Carsten
Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Department of Neurology and Experimental Neurology.
Humboldt-Universität zu Berlin, Berlin School of Mind and Brain; and.
Neurol Neuroimmunol Neuroinflamm. 2025 Jan;12(1):e200343. doi: 10.1212/NXI.0000000000200343. Epub 2024 Dec 12.
The characteristics of persistent long-term symptoms and their contribution to subjective quality of life remain unclear in patients with NMDAR encephalitis. In this study, we aimed to evaluate postacute neuropsychiatric symptoms, subjective cognitive complaints, and disease coping mechanisms and identify predictors of health-related quality of life (HRQoL) after N-methyl-D-aspartate receptor (NMDAR) encephalitis.
This cross-sectional observational study investigated patients with NMDAR encephalitis in the postacute phase. Psychometric scales included assessment of neuropsychiatric symptoms (i.e., fatigue, sleep, anxiety, and depressive symptoms), HRQoL, everyday independence, metamemory (i.e., self-rated ability, satisfaction, and use of strategies), and coping strategies (i.e., self-efficacy, disease-related coping, and stress management).
A total of 50 patients (mean age 26.0 ± 10.1 years, 86% female) participated at a median of 4.15 (range 0.3-30.3) years after symptom onset. Patients reported significantly increased levels of anxiety (Beck Anxiety Inventory: 10.5 ± 7.7 [mean ± SD], 95% CI [8.32-12.71], < 0.001) and depressive (Beck Depression Inventory-II: 11.4 ± 7.7 [9.22-13.62], = 0.001) symptoms compared with the normative population. Both sleep problems (Pittsburgh Sleep Quality Index: 5.8 ± 3.0 [4.98-6.66], < 0.001) and motor and cognitive fatigue (Fatigue Scale for Motor and Cognitive Function: 50.5 ± 23.1 [42.5-58.4], < 0.001) were significantly more prevalent. Moreover, lower self-rated memory ability (Multifactorial Memory Questionnaire score: 54.6 ± 8.5 [52.1-57.1], = 0.004) was associated with greater reliance on compensatory strategies and memory aids ( = -0.41, = 0.004). Patients used significantly fewer cognitive coping strategies, such as relativization (11.7 ± 4.7 [10.3-13.1], = 0.001), while depressive coping prevailed (49.1 ± 15.5 [44.5-53.8], < 0.001). It is important to note that HRQoL was predicted by self-reported affective symptoms, self-efficacy, and coping behaviors in multivariable regression analyses, but not by acute disease severity or postacute physical disability.
Our findings show that persistent neuropsychiatric and subjective cognitive concerns explain a large part of the reduced quality of life in patients with NMDAR encephalitis. These findings have important implications for a patient-centered postacute care and the role of disease coping strategies in the neurorehabilitation of autoimmune encephalitis.
N-甲基-D-天冬氨酸受体（NMDAR）脑炎患者长期持续症状的特征及其对主观生活质量的影响尚不清楚。在本研究中，我们旨在评估急性发作后神经精神症状、主观认知主诉及疾病应对机制，并确定NMDAR脑炎后健康相关生活质量（HRQoL）的预测因素。
这项横断面观察性研究调查了NMDAR脑炎急性期后的患者。心理测量量表包括对神经精神症状（即疲劳、睡眠、焦虑和抑郁症状）、HRQoL、日常独立性、元记忆（即自我评定能力、满意度和策略使用情况）以及应对策略（即自我效能感、疾病相关应对和压力管理）的评估。
共有50例患者（平均年龄26.0±10.1岁，86%为女性）在症状发作后中位数4.15年（范围0.3 - 30.3年）参与研究。与正常人群相比，患者报告的焦虑水平（贝克焦虑量表：10.5±7.7[均值±标准差]，95%置信区间[8.32 - 12.71]，<0.001）和抑郁水平（贝克抑郁量表第二版：11.4±7.7[9.22 - 13.62]，=0.001）显著升高。睡眠问题（匹兹堡睡眠质量指数：5.8±3.0[4.98 - 6.66]，<0.001）以及运动和认知疲劳（运动和认知功能疲劳量表：50.5±23.1[42.5 - 58.4]，<0.001）也明显更为普遍。此外，较低的自我评定记忆能力（多因素记忆问卷得分：54.6±8.5[52.1 - 57.1]，=0.004）与对代偿策略和记忆辅助工具的更大依赖相关（=-0.41，=0.004）。患者使用的认知应对策略明显较少，如相对化（11.7±4.7[10.3 - 13.1]，=0.001），而抑郁应对占主导（49.1±15.5[44.5 - 53.8]，<0.001）。重要的是，在多变量回归分析中，HRQoL由自我报告的情感症状、自我效能感和应对行为预测，而非急性疾病严重程度或急性发作后身体残疾。
我们的研究结果表明，持续的神经精神和主观认知问题在很大程度上解释了NMDAR脑炎患者生活质量下降的原因。这些发现对以患者为中心的急性发作后护理以及疾病应对策略在自身免疫性脑炎神经康复中的作用具有重要意义。
