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多发性硬化症复发的情感和心理影响。

The emotional and psychological impact of multiple sclerosis relapses.

作者信息

Kalb Rosalind

机构信息

Professional Resource Center, National Multiple Sclerosis Society, 733 Third Avenue, New York, New York, 10017, USA.

出版信息

J Neurol Sci. 2007 May 15;256 Suppl 1:S29-33. doi: 10.1016/j.jns.2007.01.061. Epub 2007 Mar 9.

Abstract

Acute relapses of multiple sclerosis (MS) are experienced as crises that disrupt the status quo for individuals with MS and their families. These unpredictable--and always unexpected--events elicit strong reactions, including grief, anxiety, anger, and guilt, as people struggle to understand why they occur. Although early relapses are a signal for most MS specialists to recommend treatment with one of the approved disease-modifying therapies, the remissions that follow contribute to patient and family denial about the realities of the disease, making it difficult for patients to begin and to adhere to ongoing treatment. Each ensuing attack confronts this denial, forcing patients and families to acknowledge the MS diagnosis and begin adapting to the demands of the illness in their daily lives. This paper discusses the meaning attributed by individuals and families to relapses leading to the MS diagnosis and the recommendation for disease-modifying therapy, the adjustments that are made by patients and their families to residual deficits following acute episodes, and suggestions for clinicians on how they might facilitate the adjustment process.

摘要

多发性硬化症(MS)的急性复发被视为危机,扰乱了MS患者及其家人的现状。这些不可预测且总是意想不到的事件引发了强烈的反应,包括悲伤、焦虑、愤怒和内疚,因为人们努力理解它们为何发生。尽管早期复发是大多数MS专家推荐使用一种已获批的疾病修正疗法进行治疗的信号,但随后的缓解导致患者和家属对疾病的现实情况予以否认,使得患者难以开始并坚持持续治疗。随后的每一次发作都直面这种否认,迫使患者和家属承认MS诊断,并开始在日常生活中适应疾病的要求。本文讨论了个人和家庭赋予导致MS诊断及疾病修正疗法推荐的复发的意义,患者及其家人对急性发作后残留缺陷所做的调整,以及对临床医生关于如何促进调整过程的建议。

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