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[德国复发缓解型多发性硬化症患者的生活质量]

[Quality of life in patients with remitting-relapsing multiple sclerosis in Germany].

作者信息

Haupts M, Elias G, Hardt C, Langenbahn H, Obert H, Pöhlau D, Sczesni B, von Wussow P

机构信息

Neurologische Universitätsklinikum, Knappschaftskrankenhaus, Ruhr-Universität Bochum.

出版信息

Nervenarzt. 2003 Feb;74(2):144-50. doi: 10.1007/s00115-002-1446-5.

Abstract

The concept of health-related quality of life (QoL) includes physical, psychological,and social aspects. This pertains to consequences of chronic diseases and their therapies beyond biological or pharmacological relations. A considerable amount of literature concerning QoL has been published with regard to neurological and non-neurological entities. This study summarizes data from a study in 717 persons with remitting-relapsing multiple sclerosis (MS). Of them,576 could be reevaluated longitudinally after 1 year of treatment with interferon-beta 1a (44 microg subcutaneous Rebif once weekly). Compared to populations of healthy controls or other patients, considerable reductions in the eight subscales and both physical and emotional sum scales of the German version of the short form of the Rand Health Questionnaire (SF-36) questionnaire were assessed. These reductions were even more pronounced in persons with gait impairments. Most SF-36 scales only modestly correlated to physical disability. This indicates that QoL as reported by patients does not depend solely on the physical symptoms of MS. Most findings remained stable for the study population as a whole during 1 year of therapy, while statistically significant improvements were found in clinical responders as defined in this study (relapse-free, physically stable, stable or improved in physician's judgement). Side effects of therapy were not reflected in lower QoL scale values. Implications of findings for future concepts in MS therapy are discussed.

摘要

健康相关生活质量(QoL)的概念包括身体、心理和社会方面。这涉及到慢性病及其治疗在生物学或药理学关系之外的后果。关于QoL,已经发表了大量有关神经和非神经疾病的文献。本研究总结了一项对717例复发缓解型多发性硬化症(MS)患者的研究数据。其中,576例患者在接受1年的干扰素-β1a(44微克皮下注射Rebif,每周一次)治疗后可进行纵向重新评估。与健康对照人群或其他患者相比,评估发现德国版兰德健康问卷简表(SF - 36)问卷的八个子量表以及身体和情感总量表均有显著降低。这些降低在步态障碍患者中更为明显。大多数SF - 36量表与身体残疾仅存在适度相关性。这表明患者报告的生活质量并不完全取决于MS的身体症状。在1年的治疗期间,对于整个研究人群而言,大多数结果保持稳定,而在本研究定义的临床反应者(无复发、身体稳定、医生判断稳定或改善)中发现有统计学意义的改善。治疗的副作用并未在较低的生活质量量表值中体现。文中讨论了这些发现对未来MS治疗概念的影响。

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