Department of Neurology, Academy of Traditional Chinese Medicine Affiliated Hospital, Tianjin, China.
Department of Neurology, Affiliated Hospital of Jining Medical College, Shandong, China.
J Clin Neurosci. 2020 Sep;79:84-89. doi: 10.1016/j.jocn.2020.06.023. Epub 2020 Aug 6.
Muscle weakness related to myasthenia gravis (MG) limits the daily functioning of patients. MG patients often experience subjective symptoms including psychiatric disorders, fatigue, and reduction in self-efficacy. All of which ultimately influence their life. The relationship between the subjective symptoms and health-related quality of life (HRQoL) has never been systematically explored among MG patients.
This study aimed to evaluate the HRQoL of patients with MG in China, and to assess the impact of potential predictors of HRQoL.
This was a cross-sectional observational study in patients with confirmed diagnosis of MG. Patients with MG were assessed using the 36-Item Short-Form Health Survey (SF-36) questionnaire, Self-Rating Depression Scale (SDS), Self-Rating Anxiety Scale (SAS), Fatigue Severity Scale (FSS), and Self-Efficacy for Managing Chronic Disease 6 items scale (SES6G). Disease severity was evaluated by two specialists at the same time.
Patients had significantly lower mean SF-36 scores for the categories role physical and general health (GH). The mean physical and mental composite scores were 57.76 ± 21.28 and 60.03 ± 23.75. Sex and unemployment influenced the QoL. Financial burden was negatively associated with total SF-36 scores. Compared to the control group, patients with generalized symptoms (MGFA II and III) had lower SF-36 scores, but the patients with pure ocular symptoms (MGFA I) had not significant difference, except GH. The SF-36 scores were highly correlated with the severity of the disease, the states of mood, fatigue, and self-efficacy.
The decrease in the HRQoL of patients with MG was related not only to the gender, severity of disease, and unemployment but also to the subjective experience including depressive and anxiety disorders, fatigue, and self-efficacy. In the course of treatment, the evaluation of HRQoL should be included in the routine assessment of patients with MG. Psychosocial treatment, social support, and health education should be advocated.
与重症肌无力（MG）相关的肌肉无力会限制患者的日常功能。MG 患者经常出现主观症状，包括精神障碍、疲劳和自我效能感降低，所有这些最终都会影响他们的生活。MG 患者的主观症状与健康相关生活质量（HRQoL）之间的关系从未得到系统研究。
本研究旨在评估中国 MG 患者的 HRQoL，并评估 HRQoL 的潜在预测因素的影响。
这是一项对确诊为 MG 的患者进行的横断面观察性研究。使用 36 项简明健康调查问卷（SF-36）、抑郁自评量表（SDS）、焦虑自评量表（SAS）、疲劳严重程度量表（FSS）和管理慢性疾病自我效能感 6 项量表（SES6G）对 MG 患者进行评估。疾病严重程度由两位专家同时评估。
患者 SF-36 各维度得分，角色躯体和总体健康显著较低。躯体和心理综合评分分别为 57.76±21.28 和 60.03±23.75。性别和失业影响生活质量。经济负担与 SF-36 总分呈负相关。与对照组相比，有全身性症状（MGFA II 和 III）的患者 SF-36 评分较低，但仅有眼肌症状（MGFA I）的患者评分无显著差异，除了总体健康维度。SF-36 评分与疾病严重程度、情绪状态、疲劳和自我效能高度相关。
MG 患者 HRQoL 的下降不仅与性别、疾病严重程度和失业有关，还与抑郁和焦虑障碍、疲劳和自我效能等主观体验有关。在治疗过程中，应将 HRQoL 评估纳入 MG 患者的常规评估。应提倡心理社会治疗、社会支持和健康教育。
