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肌萎缩侧索硬化症中心是否改变了肌萎缩侧索硬化症的护理与管理?

[Have ALS centers changed the care and management of amyotrophic lateral sclerosis?].

作者信息

Pouget J

机构信息

Centre de Référence des Maladies Neuromusculaires et de la SLA, Hôpital de La Timone, 264 rue Saint-Pierre, 13005 Marseille, France.

出版信息

Rev Neurol (Paris). 2013 Feb;169 Suppl 1:S39-44. doi: 10.1016/S0035-3787(13)70059-6.

Abstract

The multidisciplinary care of amyotrophic lateral sclerosis (ALS) patients in clinics with expertise in the disease was created in the 1980s and 1990 s specifically to manage the severe functional impairment caused by the disorder. This specialized care for both diagnosis and management led to the creation of the ALS centers. To facilitate the continuity of care through close liaisons between primary-care physicians and community-based services, a specialized network was also developed. French ALS centers are now 10 years old, and their efficient national coordination has provided an improved and homogeneous care delivery in our country, while their recommendations for care have been published both nationally and internationally. Several studies have indicated positive effects on ALS patients'survival after attending ALS centers and receiving such specialized palliative treatments as assisted ventilation.

摘要

20世纪80年代和90年代,在对肌萎缩侧索硬化症(ALS)有专业诊疗经验的诊所中,针对该疾病患者开展了多学科护理,专门用于应对该病症导致的严重功能障碍。这种针对诊断和管理的专业护理促成了ALS中心的建立。为了通过初级保健医生与社区服务之间的密切联络促进护理的连续性,还建立了一个专门的网络。法国的ALS中心如今已有10年历史,其高效的全国协调在我国实现了更好且同质化的护理服务,同时其护理建议也已在国内和国际上发表。多项研究表明,ALS患者在前往ALS中心并接受诸如辅助通气等专门的姑息治疗后,生存情况受到了积极影响。

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