ALS Unit, Department of Neurology, Hospital Carlos III Madrid, Spain.
Front Psychol. 2013 Jan 8;3:609. doi: 10.3389/fpsyg.2012.00609. eCollection 2012.
ALS is a neurodegenerative disease of the entire motor system that most frequently ends with respiratory arrest in few years. Its diagnosis and the rapid progression of the motor dysfunctions produce a continued emotional impact. Studies on this impact are helpful to plan adequate psychotherapeutic strategies.
To assess and analyze: First: How the patients with ALS perceive their emotional health. Second: The emotional impact of their physical disabilities. Third: The physical disabilities with highest emotional impact. Fourth: The feelings with highest emotional impact.
Up to 110 Spanish patients with ALS were assessed less than 1 year from diagnosis, then twice more at 6 month intervals, using the ALS Quality of Life Assessment Questionnaire (ALSAQ-40) validated for use in Spanish. Descriptive analysis and correlation between variables were obtained.
Worries about the future, of lack of freedom, and of being a burden were prevalent feelings. On average depression was felt only "sometimes." Only 25% of the variations in the emotional state were explained by changes in the physical state at first evaluation, and 16% at the last one. Emotional functioning correlated significantly with the physical disabilities at first and second evaluation, less so at third. Communication disabilities always had the highest impact. Depression at first evaluation and hopelessness at the next two evaluations had the highest emotional impact. Hopelessness did not correlate with any physical disability at the third evaluation. On the whole, emotional dysfunction was self perceived as intermediate (between none and worst), and remained stable at 1 year follow up, in both bulbar and spinal onset patients.
Physical dysfunctions per se have a limited role in patients´ emotional distress. Communication disabilities, as well as feelings of depression at early stages of illness, and of hopelessness later on, had the most impact. This requires their careful therapeutic attention. On average, Spanish patients with ALS cope with their disease, overcoming depression, which is not felt often, and with just mid levels of emotional dysfunction.
肌萎缩侧索硬化症（ALS）是一种影响整个运动系统的神经退行性疾病，其通常在几年内导致呼吸停止。其诊断和运动功能障碍的快速进展会持续产生情绪影响。研究这种影响有助于制定适当的心理治疗策略。
评估和分析：第一，ALS 患者如何感知自己的情绪健康。第二，身体残疾对情绪的影响。第三，身体残疾中情绪影响最大的因素。第四，情绪影响最大的感受。
在诊断后不到 1 年，对 110 名西班牙 ALS 患者进行评估，此后每 6 个月评估两次，使用经过验证的西班牙语版 ALS 生活质量评估问卷（ALSAQ-40）。获得描述性分析和变量之间的相关性。
对未来、缺乏自由和成为负担的担忧是普遍存在的感受。平均而言，“有时”才会感到抑郁。第一次评估时，情绪状态的变化只有 25%可以用身体状态的变化来解释，最后一次评估时为 16%。情绪功能在第一次和第二次评估时与身体残疾显著相关，在第三次评估时相关性较小。沟通障碍始终具有最大的影响。第一次评估时的抑郁和接下来两次评估时的绝望感具有最大的情绪影响。在第三次评估时，绝望感与任何身体残疾均无相关性。总体而言，情绪功能障碍被患者自我评估为中等（介于无和最差之间），在 1 年随访中保持稳定，无论是延髓还是脊髓发病的患者。
身体功能障碍本身在患者的情绪困扰中作用有限。沟通障碍，以及疾病早期的抑郁感和后期的绝望感，影响最大。这需要对其进行仔细的治疗关注。平均而言，西班牙 ALS 患者能够应对疾病，克服不常感到的抑郁，并具有中等程度的情绪功能障碍。
