重症肌无力-生活质量-15项评分在中国重症肌无力患者中的应用分析

目的 探讨重症肌无力-生活质量-15项评分(MG-QoL-15)在我国重症肌无力患者中的应用。方法 收集2014年4月～2016年3月确诊MG患者,病情处于稳定期,记录包括年龄、性别、当前MGFA级、最差的MGFA及治疗方案,治疗性干预包括胸腺切除术、胆碱酯酶抑制剂、激素和其它免疫抑制剂; 用MG-QOL-15中文版来评分,每个项目评分上标准是“0分”,“1分”,“2分”,“3分”和“4分”代表“完全没有”、“偶有”、“有一些”、“经常有”和“非常多”。结果 共纳入65例患者,MGFA Ⅰ患者是13例,MGFA Ⅱ是17例,MGFA Ⅲ是14例,MGFA Ⅳ是21例,平均MG-QOL-15评分(7.22±6.44)分,当前等级MGFA和口服强的松与生活质量分数有关; 性别、年龄>40岁、胸腺切除、口服溴吡斯的明的例数无显著差异(P>0.05)。结论 MG-QOL-15评分是一种简单、快捷、人性化的工具,有利于更好地评估治疗效果。     

重症肌无力患者汉密尔顿抑郁量表评分分析

目的探讨重症肌无力(myasthenia gravis,MG)患者汉密尔顿抑郁量表(Hamilton depression rating scale,HDRS)评分情况及其影响因素分析。方法横断面研究2013-07—2015-03作者医院就诊的188例MG患者的临床资料和HDRS评分情况,并根据HDRS评分将其分为抑郁组和非抑郁组,分析两组MG患者的临床特点及其与HDRS评分间的关系。结果所纳入MG患者男女比例为1.02∶1,眼肌型重症肌无力(ocular myasthenia gravis,OMG)和全身型重症肌无力(generalized myasthenia gravis,GMG)的比例为1.2∶1,以OMG起病和以GMG起病患者的比例为6.2∶1,病程中位数为2年,四分位数间距为1.8年,平均量化重症肌无力评分(quantitative myasthenia gravis,QMG)为(6.7±2.3)分,平均HDRS评分为(8.7±3.4)分,并发抑郁者65例,未并发抑郁者123例。影响HDRS评分和抑郁发生的相关因素包括性别(P0.01)、MG类型(P0.01)、QMG得分(P0.01)和美国重症肌无力协会(myasthenia gravis foundation of America,MGFA)分型(P0.01)、有无甲状腺功能亢进(P0.05)。结论影响MG患者HDRS评分和抑郁发生的相关因素包括性别、MG类型、QMG评分和MGFA分型、有无甲状腺功能亢进,充分认识其抑郁发生情况有利于更好地治疗MG。     

SF-36量表测定重症肌无力患者生活质量分析

目的 探讨 SF-36 量表测定重症肌无力患者的生活质量,以寻找良好的疾病严重度评估标准.方法 采用SF-36量表对重症肌无力患者和健康对照人群进行面对面问卷调查,比较重症肌无力患者与健康对照人群组间,眼肌型与全身型患者之间在躯体功能、社会功能等8 个维度方面的区别.结果 (1)重症肌无力患者SF-36 量表各维度Cronbach's α系数均大于或接近0.7; 健康对照人群组除活力(VT)和社会功能(SF)维度外,其他维度Cronbach's α系数均大于0.7.(2)健康对照人群组躯体角色(RP)、情绪角色(RE)、活力(VT)、社会功能(SF)、躯体功能(PF)、维度得分显著高于重症肌无力患者.(3)眼肌型患者与全身型患者的生活质量比较差异无统计学意义.结论 SF-36 测定中国重症肌无力患者中使用具有较好的信度,可作为疾病严重程度的评估标准.     

37例重症肌无力患者的护理

重症肌无力是一种神经-肌肉接头部位因乙酰胆碱受体减少而出现传递障碍自身免疫性疾病[1],临床症状多样.2004-03～2006-12,我科共收治重症肌无力病人37例,针对其所表现的症状采取护理措施,现报告如下.     

辅助性T细胞及其细胞因子在重症肌无力中的作用

目的探讨辅助性T细胞及其相关细胞因子在全身型MG患者急性期发病中的作用。方法采用流式细胞术检测33例全身型MG患者和34例健康对照组外周血中Tfh细胞亚群CXCR5~+CD4~+T、CD45RO~+CXCR5~+CD4~+T、CD45RA~+CXCR5~+CD4~+T、ICOS~+CXCR5~+CD4~+T和PD-1~+CXCR5~+CD4~+T细胞占CD4~+T细胞的比例。采用流式液相多重蛋白定量(cell based assay,CBA)技术检测MG组及对照组血清中IL-17A、IFN-γ、IL-4、IL-21的含量。应用ELISA技术检测MG组及对照组血清中IL-22的含量。根据QMGs(the quantitative myasthenia gravis score,QMGs)对纳入研究的MG患者进行评分,QMGs反映了MG患者的病情严重程度。结果 MG组外周血中的循环Tfh细胞(ICOS~+CXCR5~+CD4~+T和PD-1~+CXCR5~+CD4~+T)较对照组增高(P=0.016,P0.001),且PD-1~+CXCR5~+CD4~+T细胞与MG患者病情严重程度正相关(r=0.405,P=0.019)。MG组血清IL-21、IL-17A、IFN-γ的含量较对照组升高,有统计学意义(P=0.007,P=0.016,P=0.007);MG组血清IL-4的含量较对照组略有增多,IL-22含量较对照组略有减少,但均无统计学意义。MG组IL-4含量QMGs呈负相关,差异具有显著性(r=-0.393,P=0.024)。结论 MG急性期ICOS~+和PD-1~+的循环Tfh细胞可能促进MG发病;IL-21、IFN-γ、IL-17A同样可能促进MG发病;IL-4可能对MG有保护作用。     

11例重症肌无力危象患者的护理体会

我科自2007年以来成功救治了11例发生肌无力危象的重症肌无力患者,现将护理体会报告如下。1资料与方法1.1一般资料本组11例重症肌无力危象均为2007-01—2012-09在我科住院的患者,男5例,女6例;年龄21～60岁,平均40岁;病程6个月～10a;诱发因素:呼吸道感染5例,劳累过度3例,应用激素2例,胸腺瘤术后1例。1.2抢救方法肌无力危象发生时采取的急救措施主要包括:(1)及时吸痰,保障气道通畅,持续吸氧,密切配合医生行     

重症肌无力患者抑郁障碍与皮质醇昼夜节律的关联性分析

目的 观察重症肌无力(Myasthenia gravis,MG)伴抑郁障碍患者皮质醇(COR)昼夜节律变化,探讨MG患者抑郁障碍与COR昼夜节律之间的关联性.方法 根据HAMD-24抑郁量表评分将43例MG患者分为伴抑郁组、不伴抑郁组,采用电化学发光法检测各组8:00、16:00、24:00外周血COR水平,并将所得结果与正常对照组(n=38)进行比较.同时比较不同Osserman分型与正常对照组的日平均COR水平及HAMD-24评分结果.结果 (1)MG伴抑郁组、不伴抑郁组及正常对照组COR水平均随时间点的不同而不同(F =2.824,P=0.036);其中,MG伴抑郁组各个时间点COR水平均高于正常对照组(P =0.009 ＜0.005);(2) MG不同Osserman分型组HAMD-24项评分不同(x2=62.268,P=0.000),日平均COR水平比较无统计学意义(x2=3.332,P=0.343).结论 MG伴抑郁障碍患者COR水平高于正常对照组;与正常对照组相比,MG伴抑郁障碍组还表现出COR昼夜节律的紊乱.     

脑卒中患者情感障碍及生活质量研究

目的探讨脑卒中患者情感障碍的发生率,脑卒中部位与情感障碍的关系,以及对患者生活质量的影响。方法运用抑郁自评量表(SDS)、焦虑自评量表(SAS)、神经功能缺损量表(NFDS)和诺丁汉健康问卷(NHP)对191例脑卒中患者进行现状调查。结果191例患者中发生情感障碍85例(44.5%),55例(65.90%)同时出现抑郁和焦虑。情感障碍的发生与额叶、左侧大脑半球、基底节病灶有关;脑卒中伴情感障碍患者NFDS和NHP评分高。结论脑卒中后情感障碍发生率较高,与脑卒中部位相关,对患者的神经功能及生活质量有明显的影响,不利于脑卒中患者的康复。     

癫癎患者生活质量的研究

目的探讨成年癫癎患者生活质量状况及其影响因素.方法实验组86例癫癎患者,对照组59名健康自愿受试者.用世界卫生组织生存质量量表中文版简表(Q0 L-BREF)、癫癎患者生活质量量表(QOLIE-31)评定生活质量;用症状自评量表评价心境健康;分析各种影响因素的作用.结果实验组生活质量在心理领域得分比对照组低(P＜0.05);除精力/疲乏领域外的各领域均有50%以上实验组QOLIE-31得分低于平均水平;实验组的抑郁、焦虑分均比对照组明显增高(P＜0.0001);影响QOLIE总分的三个因素按作用大小依次是抑郁、焦虑和用药种数.结论癫癎患者生活质量下降,心境健康恶化;对总体QOLIE影响最大的因素是抑郁、焦虑和用药种数.     

难治性抑郁症临床特征研究

目的:探讨难治性抑郁症患者的临床特征.方法:25例难治性抑郁症患者(难治组)和50例非难治性抑郁症患者(非难治组),进行一般情况评定,17项汉密尔顿抑郁量表(HAMD)、14项汉密尔顿焦虑量表(HAMA)量表评分,明尼苏达多项人格问卷(MMPI)评定.结果:难治组与非难治组比较,男性较多,受教育水平较低,发病年龄较早,...     

Quality of life in 188 patients with myasthenia gravis in China

Myasthenia gravis (MG) is a kind of chronic autoimmune disease which can weaken patients' motor function and, furthermore, produce negative impact on the health-related quality of life (HRQoL). The primary purpose of this research was to evaluate factors that might affect the HRQoL of MG patients. A cross-sectional clinical research was carried out including 188 successive patients with MG. Myasthenia Gravis Foundation of America (MGFA) classification and Quantitative Myasthenia Gravis (QMG) score were applied to assess the severity of the disease. The Medical Outcome Survey 36-Item Short-Form Health Survey (SF-36) was used to estimate the HRQoL. Hamilton Depression Rating Scale (HDRS) and Hamilton Anxiety Rating Scale (HARS) were utilized to measure the depression and anxiety symptom. Factors may influence the HRQoL of MG patients include age, educational level, occupation, the situation of the thymus, the type of MG and generalized myasthenia gravis (GMG), the severity of the disease and the psychological disorder. Higher QMG and HARS scores were two significant factors that can prognosticate lower Physical Composite Score (PCS) and Mental Composite Score (MCS), while older age was just a significant factor which has prognostic value for lower PCS. The results of this research may have a potential guiding significance for the clinical treatment strategy and improve the quality of life in patients with MG consequently. In addition to the treatment of physical symptoms, the psychological symptoms such as anxiety and depression should be concerned as well.     

Quality of life and well-being of patients with myasthenia gravis

The cardinal symptom of myasthenia gravis (MG) is weakness of voluntary muscles, a feature that may restrict full participation in life activities. In turn, such limitations may negatively affect quality of life (QOL) and well-being among individuals with the disease. In the present study, we administered a measure of QOL to 27 patients with generalized MG. Results revealed that functional status was negatively impacted in the domains of physical functioning, energy, and general health. However, a clinically meaningful difference was evident only on perceived ability to accomplish physical tasks. The results suggest that although MG requires accommodations in physical activities, general QOL and well-being does not differ markedly from the general population.     

Disease-specific measure of quality of life for myasthenia gravis

In 2000 a Task Force of the Myasthenia Gravis Foundation of America recommended development of a quality of life (QOL) measure specific for myasthenia gravis (MG). Extant investigations have relied solely on assessment of physical aspects of daily living in conceptualizing QOL, despite research that emphasizes the importance of including psychological factors. In the present study we developed a QOL questionnaire specific to MG (MG-QOL) that assesses both physical and psychological aspects of function. The MG-QOL questionnaire was administered as a secondary measure of efficacy in a recently completed prospective trial of mycophenolate mofetil involving 80 MG patients. Comparisons indicated that the MG-QOL performed better than a nondisease-specific measure of QOL, the SF-36, in demonstrating disease change as assessed by the primary measure, the Quantitative MG score (QMG). The MG-QOL correlated highly with the SF-36, and demonstrated stronger associations with independent physical ability ratings. Results from this study support the use of this new measure of QOL, both clinically and in treatment trials of MG.     

The MG-QOL15 for following the health-related quality of life of patients with myasthenia gravis

The MG-QOL15 is helpful in informing the clinician about the patient's perception of the extent of and dissatisfaction with myasthenia gravis (MG)-related dysfunction. The aims of this study were to determine the usefulness of the MG-QOL15 for following individuals with MG and to guide clinical researchers who plan to use the MG-QOL15. We assessed sensitivity and specificity for detecting clinical change and evaluated test-retest reliability. Sensitivities and specificities of various cut-points of change in scores are presented. Also presented are means and standard deviations of MG-QOL15 scores for all patients and for subgroups of patients. The test-retest reliability coefficient was 98.6%. The MG-QOL15 has an acceptable longitudinal construct validity. We consider this instrument to be most useful for informing the clinician about the patient's perception and tolerance of MG-related dysfunction. More objective measures, such as the MG Composite, should also be used to follow disease severity.     

Fatigue is a relevant outcome in patients with myasthenia gravis

Introduction: Patients with myasthenia gravis often experience fatigue, but its effect on quality of life (QoL) is underestimated, and fatigue is rarely measured in clinical trials. Methods: Two hundred fifty‐seven myasthenic patients completed the Neuro‐QoL‐Fatigue and measures of disease severity and QoL. We studied the relationship between fatigue and clinical and demographic variables. Finally, we studied the responsiveness of the Neuro‐QoL‐Fatigue in 95 patients receiving treatments for myasthenia and estimated the minimal important difference (MID). Results: Fatigue correlated with greater disease severity (r = 0.52–0.69, P < 0.0001) and worse QoL (r = 0.65–0.75, P < 0.0001). Patients in remission, with minimal manifestations, and pure ocular symptoms reported minimal fatigue. Regression modeling showed that, in addition to its relationship with disease severity, fatigue was worse in females, patients with generalized disease, and those with anxiety/depression. Fatigue improved after immunomodulation (P < 0.0001), and the MID was 5.3 points. Discussion: Fatigue in myasthenia correlates with disease severity, affects QoL, and can improve after treatment. Muscle Nerve 58 : 197–203, 2018     

应用SF-36中文版对偏头痛患者生存质量的调查

目的探讨偏头痛患者生存质量的现状,分析其影响因素。方法采用健康状况量表SF-36中文版对122例偏头痛患者和112例健康者对照并进行现场问卷调查。用两样本t检验比较两组生存质量评分,以多元逐步回归分析筛选偏头痛组生存质量的影响因素。结果偏头痛组在生理功能、生理职能、躯体疼痛、总体健康、精力、社会功能、情感职能、精神健康等8个维度的评分上均显著低于对照组（P〈0.01）;偏头痛患者生理综合评分的影响因素有头痛频率、头痛程度、学历,心理综合评分的影响因素有头痛程度、头痛频率、病程、学历。结论偏头痛患者生存质量偏低,通过控制其影响因素,如头痛频率、程度等可能有助于改善患者的生存质量。