多发性硬化症患者的生活质量

G. Franek, Marzena Bieniak, A. Cieślik
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引用次数: 11

摘要

介绍。多发性硬化症(MS)是一种无法治愈的中枢神经系统脱髓鞘疾病。这种疾病的慢性性质导致患者的身体、精神、情感和社会状况恶化,从而大大降低了他们的生活质量。的目标。该研究的目的是确定多发性硬化症患者的生活质量。材料和方法。该研究涉及100名多发性硬化症患者,与西里西亚省的支持小组有关。受访者中有77名女性和23名男性。选择FAMS问卷-第4版(多发性硬化症生活质量功能评估工具)来衡量多发性硬化症患者的生活质量。得到的研究资料进行统计分析,使用统计软件包STATISTICA v12进行计算。为了计算变量,采用了算术平均值、标准差、变异系数、不对称系数、峰度系数、Person线性相关系数、Spearman秩相关系数。结果。被检查组FAMS问卷第4版各分量表的平均成绩达到111.1分;也就是说,在没有差评的情况下,达到令人满意的水平(65%的受访者),35%的人成绩好。结果是生活质量的第二级,在58-117分的数值范围内。得分最低的是“活动能力”(14.39分),最高的是“其他疾病”(36.77分)。FAMS得分与个体分量表之间存在很强的相关性。随着亚量表评分的增加,FAMS评分也随之增加,分数越高,MS患者的生活质量越好。应答者的年龄越高,FAMS结果越低,而单向治疗过程——无论是药物治疗还是康复治疗——并不能改善ms患者的生活质量,只有综合行动才能提高ms患者的生活质量。在一种疾病形式的情况下——原发性进行性和原发性进行性伴加重形式影响ms患者的生活质量。大多数多发性硬化症患者对生活质量的评估是满意的,没有不良评分,有三分之一的评分为良好。FAMS结果与所有子量表之间存在联系,表明子量表评分越高,FAMS结果越高,即MS患者的生活质量越好。性别不能决定答复者的生活质量,而年龄、疾病的形式和治疗的类型影响生活质量。【关键词】多发性硬化症;生活质量;脱髓鞘病
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Quality of Life in Patients with Multiple Sclerosis
Introduction. Multiple sclerosis (MS) is an incurable demyelinating disease of the central nervous system (c.n.s.). The chronic nature of this disease causes deterioration of the physical, mental, emotional and social condition of patients, which significantly reduces their quality of life. Aim. The aim of the study was to determine the quality of life of patients with multiple sclerosis. Material and Methods. The study involved 100 patients with multiple sclerosis, associated in support groups operating in the Silesian voivodeship. Among the respondents were 77 women and 23 men. The FAMS questionnaire — version 4 (Functional Assessment of Multiple Sclerosis Quality of Life Instrument) was chosen to measure the quality of life of patients with multiple sclerosis. The obtained research material was subjected to a statistical analysis, using the statistical package STATISTICA v12 for calculations. In order to calculate the variables, the following measures were used: arithmetic mean, standard deviation, coefficient of variation, asymmetry coefficient, kurtosis coefficient, Person linear correlation coefficient, Spearman rank correlation coefficient. Results. The average results of all subscales of the FAMS questionnaire-version 4 in the examined group reached the value of 111.1 points; that is, a satisfactory level (65% of all respondents), in the absence of bad assessments, and 35% of good grades. The result is at the second level of quality of life, in the numerical range of 58–117 points. The lowest scores were recorded in the “Mobility” subscale (14.39 points), and the highest in “Other ailments” (36.77 points). Strong correlations were found between the FAMS score and individual subscales. As the subscale score increased, the FAMS score increased, and the higher the score, the better the quality of life of MS patients. The higher the respondent’s age, the lower the FAMS results, while the one-way treatment process — either pharmacology or rehabilitation — does not improve the quality of life, only integrated actions increase the quality of life of patients with MS. In the case of a form of the disease — a primary progressive and primary progressive form with exacerbations affect the quality of life of patients with MS. Conclusions. Most MS patients assessed their quality of life as satisfactory, in the absence of bad and with one-third of good scores. The existence of links between the FAMS results and all subscales indicates that the higher the subscales rated, the higher the FAMS result, i.e. the better quality of life of MS patients. Gender does not determine the quality of life of the respondents, while age, the form of the disease and the type of treatment affect the quality of life. (JNNN 2019;8(3):95–101) Key Words: multiple sclerosis, quality of life, demyelinating disease
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