Section of Neurophysiology, University of Ulm, Albert-Einstein-Allee 47, 89081, Ulm, Germany.
J Neurol. 2012 Feb;259(2):334-41. doi: 10.1007/s00415-011-6191-x. Epub 2011 Aug 2.
Despite the devastating motor impairment, a significant number of patients with amyotrophic lateral sclerosis (ALS) maintain a good psychosocial adjustment. Here we investigated whether this is specific for ALS or a more general characteristic of terminal disease. Psychosocial adjustment was investigated in 30 ALS patients, 29 cancer patients in palliative treatment and 29 age-, gender- and level of education-matched healthy controls. Subjective quality of life (sQoL), degree of depressive symptoms and coping were evaluated as measures of psychosocial adjustment. Personality factors were described. ALS and cancer patients showed a good psychosocial adjustment. Subjective QoL and depression did not differ significantly. Both patient groups presented a good sQoL. The level of mild depressive symptoms in both patient groups was similar and none showed clinically relevant depression. ALS patients expressed fewer active coping strategies than cancer patients which were explained by gender differences. Both patient groups showed comparable psychosocial adjustment to their disease. Overall, in terminally ill patients the psychological response to the prognosis is not associated with neurobiological changes (e.g., associated with subclinical deficits in ALS) or with physical decline.
尽管肌萎缩侧索硬化症（ALS）患者存在严重的运动障碍，但仍有相当一部分患者能够很好地适应社会心理。在这里，我们研究了这种情况是ALS 特有的还是终末期疾病的普遍特征。我们对 30 名 ALS 患者、29 名姑息治疗的癌症患者和 29 名年龄、性别和教育程度相匹配的健康对照者进行了社会心理调整调查。采用主观生活质量（sQoL）、抑郁症状程度和应对方式作为社会心理调整的衡量标准。同时还描述了人格因素。ALS 和癌症患者表现出良好的社会心理调整。主观 QoL 和抑郁程度没有显著差异。两组患者的 sQoL 都很好。两组患者的轻度抑郁症状水平相似，均无临床相关抑郁。ALS 患者比癌症患者表达了更少的积极应对策略，这可以用性别差异来解释。两组患者对疾病的社会心理适应能力相当。总之，在终末期患者中，对预后的心理反应与神经生物学变化（如 ALS 亚临床缺陷相关）或身体衰退无关。
