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应对肌萎缩性侧索硬化症:综合观点。

Coping with amyotrophic lateral sclerosis: an integrative view.

机构信息

Institute of Medical Psychology and Behavioral Neurobiology, Eberhard-Karls-University Tübingen, Tübingen, Germany.

出版信息

J Neurol Neurosurg Psychiatry. 2010 Aug;81(8):893-8. doi: 10.1136/jnnp.2009.201285. Epub 2010 Jun 28.

DOI:10.1136/jnnp.2009.201285
PMID:20587497
Abstract

OBJECTIVES

To identify predictors of psychosocial adjustment to motor neurone disease.

METHODS

A total of 27 individuals with a confirmed diagnosis of amyotrophic lateral sclerosis (ALS) participated in the study. The ALS functional rating scale mean score indicated a high physical impairment of the sample. Months since diagnosis varied between 4 and 129 (median 36). Adjustment outcomes were severity of depressive symptoms and individual quality of life (QoL). Predictors included social support, cognitive appraisal, coping strategies and illness parameters.

RESULTS

Multiple regression analysis revealed that approximately 60% of the variance of depression and QoL were accounted for by social support, coping strategies and cognitive appraisal. The degree of physical impairment did not explain any variance of the adjustment outcomes. The best predictors for the severity of depressive symptoms were perceived social support and appraisal of coping potential (internal locus of control) and for individual QoL perceived social support.

CONCLUSIONS

The focus on medical issues in treatment of ALS is not sufficient. A palliative approach to ALS must equally imply advice with regards to adequate coping strategies, provide the adequate amount of disease- and support-related information at any one time, and encourage patients to seek social support. Sufficient medication and psychotherapy has to be provided for those patients who show depressive symptoms or disorder.

摘要

目的

确定运动神经元病患者心理社会适应的预测因素。

方法

共有 27 名确诊为肌萎缩侧索硬化症(ALS)的患者参与了这项研究。ALS 功能评定量表的平均评分表明,该样本的身体损伤程度较高。诊断后时间从 4 个月到 129 个月不等(中位数为 36 个月)。调整结果包括抑郁症状严重程度和个体生活质量(QoL)。预测因素包括社会支持、认知评价、应对策略和疾病参数。

结果

多元回归分析显示,抑郁和 QoL 的约 60%的变异性由社会支持、应对策略和认知评价来解释。身体损伤程度并不能解释调整结果的任何变异性。抑郁症状严重程度的最佳预测因素是感知到的社会支持和应对潜力的评估(内部控制点),以及个体的 QoL 感知到的社会支持。

结论

在治疗 ALS 时,仅关注医疗问题是不够的。ALS 的姑息治疗方法必须同样包括关于适当应对策略的建议,在任何时候都提供足够数量的与疾病和支持相关的信息,并鼓励患者寻求社会支持。对于那些出现抑郁症状或障碍的患者,必须提供足够的药物治疗和心理治疗。

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