Modrego P J, Pina M A, Simón A, Azuara M C
Neurology Unit, Hospital del INSALUD de Alcañiz, Spain.
Neurorehabil Neural Repair. 2001;15(1):69-73. doi: 10.1177/154596830101500109.
Multiple sclerosis (MS) is one of the most disabling diseases in young people, but the interrelation between disability and quality of life is poorly understood. As individual correlations between disability and the perspective of the patient may be weak in individual subjects, the purpose of our work was to analyze and correlate quality of life with neurologic impairment and disability in all patients with MS from the geographic area of the Bajo Aragón in the northeastern region of Spain. A total of 36 patients with a diagnosis of probable or clinically definite MS had an average age was 38.1 years (range,17-66 years). The majority of them were women (66.6%) and had relapsing-remitting forms (83.3%). The Minimal Record of Disability measured neurologic impairments, functional limitations, and handicaps. Quality of life was measured by the Functional Assessment of Multiple Sclerosis (FAMS) scale. Statistical analysis was performed with the Kruskal-Wallis nonparametric test and Pearson's coefficient of correlation. The mean EDSS of our cohort was 2.76 (range, 0-9). The mean FAMS score was 78.6 (SD, 52.5). We found that patients moderately or severely disabled (EDSS >3) showed a significantly decreased satisfaction in comparison with the nondisabled or mildly disabled ones. Disability and handicaps were significantly related to some items of FAMS: mobility, symptoms, and emotional well-being, but not with the remaining items: general contentment, thinking and fatigue, family and social well-being, and additional concerns. In comparison with patients from other population-based surveys, our patients were less disabled and enjoyed a better quality of life. Although we globally observed poorer quality of life in more disabled patients, the perspectives of the patients did not necessarily agree with disability scales in some domains of health. Quality of life should be included in the approach to MS patients if we want to provide cost-effective health care.
多发性硬化症（MS）是年轻人中最致残的疾病之一，但人们对残疾与生活质量之间的相互关系了解甚少。由于在个体患者中，残疾与患者自身认知之间的个体相关性可能较弱，我们研究的目的是分析西班牙东北部阿拉贡低地地区所有多发性硬化症患者的生活质量，并将其与神经功能损害和残疾情况进行关联。共有36例被诊断为可能或临床确诊的多发性硬化症患者，平均年龄为38.1岁（范围17 - 66岁）。其中大多数为女性（66.6%），且为复发缓解型（83.3%）。残疾最小记录量表用于衡量神经功能损害、功能受限和残障情况。生活质量通过多发性硬化症功能评估（FAMS）量表进行测量。采用Kruskal - Wallis非参数检验和Pearson相关系数进行统计分析。我们研究队列的平均扩展残疾状态量表（EDSS）评分为2.76（范围0 - 9）。FAMS平均得分为78.6（标准差52.5）。我们发现，中度或重度残疾（EDSS >3）的患者与非残疾或轻度残疾患者相比，满意度显著降低。残疾和残障与FAMS的一些项目显著相关： mobility、症状和情绪健康，但与其他项目无关：总体满意度、思维和疲劳、家庭和社会幸福感以及其他担忧。与其他基于人群的调查中的患者相比，我们的患者残疾程度较轻，生活质量更好。尽管我们总体上观察到残疾程度较高的患者生活质量较差，但在某些健康领域，患者的认知不一定与残疾量表一致。如果我们想提供具有成本效益的医疗保健，在对多发性硬化症患者的治疗中应纳入生活质量评估。
