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复发型多发性硬化症患者的健康和生活质量:使无形变有形。

Health and quality of life in patients with relapsing multiple sclerosis: making the intangible tangible.

机构信息

Baptist Health Comprehensive Care Multiple Sclerosis Center, Coral Gables, FL 33146, USA.

出版信息

J Neurol Sci. 2009 Dec;287 Suppl 1:S11-6. doi: 10.1016/S0022-510X(09)71295-X.

Abstract

Multiple sclerosis is diagnosed primarily in young adults with aspirations for both family and careers. For this reason, it is important to take into account the potential impact of disease and treatment on these aspirations, which relate to quality of life. Quality of life evaluations and measurements have now become an integral part of comprehensive care for multiple sclerosis patients. Moreover, quality of life endpoints are now included in most therapeutic trials of potential new treatments, as well as in observational studies of the management of multiple sclerosis. The scope of quality of life includes self-perceived status in three important domains of life, namely physical (e.g. disability, strength), psychological (e.g. depression, fatigue) and social functioning (e.g. employment, usual daily activities). A number of studies have demonstrated a positive impact on quality of life of treatment with glatiramer acetate in the above areas. Several of these included direct comparisons between glatiramer acetate and interferon-beta. it is important that quality of life issues are addressed at the outset by patients and professionals, and taken into account when choosing the most appropriate therapy for a given individual.

摘要

多发性硬化症主要发生在有家庭和事业抱负的年轻成年人中。因此,重要的是要考虑疾病和治疗对这些抱负的潜在影响,这些抱负与生活质量有关。生活质量评估和测量现在已成为多发性硬化症患者综合护理的一个组成部分。此外,生活质量终点现在已包含在大多数潜在新治疗方法的治疗试验中,以及多发性硬化症管理的观察性研究中。生活质量的范围包括自我感知的生活的三个重要领域的状况,即身体(例如残疾、力量)、心理(例如抑郁、疲劳)和社会功能(例如就业、日常活动)。许多研究表明,用醋酸格拉替雷治疗在上述领域对生活质量有积极影响。其中一些研究包括醋酸格拉替雷与干扰素-β之间的直接比较。重要的是,患者和专业人员应从一开始就解决生活质量问题,并在为特定个体选择最合适的治疗方法时考虑这些问题。

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