Isaksson A-K, Ahlström G, Gunnarsson L-G
Department of Caring Sciences, University of Orebro, S-701 82 Orebro, Sweden.
J Neurol Neurosurg Psychiatry. 2005 Jan;76(1):64-9. doi: 10.1136/jnnp.2003.029660.
The aims of this study were to describe the quality of life in patients with multiple sclerosis (MS) given immunological treatment and in those not given immunological treatment and to investigate the relationship between impairment and quality of life.
Twenty nine patients given immunological treatment were matched with the same number of patients not given such treatment. Matching variables were sex, Kurtzke's Expanded Disability Status Scale (EDSS), years since diagnosis, and age (total n = 58). The patients were interviewed using the self-reported impairment checklist and they answered two questionnaires on quality of life, the 36-Item Short-Form Health Survey (SF-36) and the Subjective Estimation of Quality of Life (SQoL).
The self-reported impairment checklist captured a more differentiated picture of the patients' symptoms of MS than the EDSS. Health related quality of life was markedly reduced, while the subjective quality of life was less affected. There was a stronger association between self-reported ratings of impairment and health related quality of life on the SF-36 than between impairment and global ratings of quality of life on the SQoL. Subjective quality of life on the SQoL was not directly dependent on impairment expressed in physical limitations. There were no statistically significant differences between the treated and untreated groups. A non-significant trend towards better health related quality of life was found in favour of the treated group with respect to emotional role, physical role, and social function on the SF-36.
The self-reported impairment checklist and SF-36 proved to be valuable complements to the well established EDSS in describing the diverse symptoms of MS. Measuring both health related quality of life and subjective wellbeing provides valuable knowledge about the consequences of MS.
本研究旨在描述接受免疫治疗和未接受免疫治疗的多发性硬化症(MS)患者的生活质量,并调查损伤与生活质量之间的关系。
29名接受免疫治疗的患者与相同数量未接受此类治疗的患者进行匹配。匹配变量包括性别、库尔特克扩展残疾状态量表(EDSS)、诊断后的年限和年龄(总数n = 58)。使用自我报告的损伤清单对患者进行访谈,并让他们回答两份关于生活质量的问卷,即36项简短健康调查(SF - 36)和生活质量主观评估(SQoL)。
自我报告的损伤清单比EDSS更能全面地反映MS患者的症状。与健康相关的生活质量显著降低,而主观生活质量受影响较小。在SF - 36上,自我报告的损伤评分与健康相关生活质量之间的关联比损伤与SQoL上生活质量总体评分之间的关联更强。SQoL上的主观生活质量并不直接取决于身体限制所表达的损伤。治疗组和未治疗组之间没有统计学上的显著差异。在SF - 36的情感角色、身体角色和社会功能方面,发现治疗组有健康相关生活质量更好的非显著趋势。
自我报告的损伤清单和SF - 36被证明是对成熟的EDSS在描述MS多样症状方面有价值的补充。同时测量与健康相关的生活质量和主观幸福感能提供有关MS后果的有价值信息。