Quality of life in patients with amyotrophic lateral sclerosis: perceptions, coping resources, and illness characteristics.

OBJECTIVE To assess and compare quality of life (QOL) for two groups of patients with amyotrophic lateral sclerosis (ALS): (1) those reporting a more positive quality of life and (2) those reporting a more negative quality of life. METHODS One hundred patients with ALS participated in this cross-sectional, descriptive study conducted in an ALS clinic. Quality of life was graded in two ways: (1) a global question about present QOL, giving four choices (life could not be better, usually good, sometimes good, and not good) which the researchers divided into two groups: the more positive QOL and the more negative QOL and (2) patients' responses to a 25-item internally generated open-ended survey. The Appel ALS Rating Scale measured objective data for physical strength and functioning. RESULTS One hundred patients (68 men and 32 women) with a mean age of 58.2 (range, 29-82) years participated in the study. The average disease duration was 1.9 (range, 0.08-15) years. Patients who reported the more positive QOL were younger, had a shorter disease duration, and experienced less disease severity (p < 0.05). Those endorsing the more positive QOL reported more adequate finances and less stress over disease characteristics (p < 0.05). CONCLUSIONS Illness characteristics do influence QOL for patients with ALS, but they are not the only concerns. When measuring QOL in patients with ALS, the unique features of the psychosocial factors, personality traits, and spiritual factors, in addition to disease symptoms, need to be identified and discussed with patients and families throughout the illness.

目的 评估并比较两组肌萎缩侧索硬化（ALS）患者的生活质量（QOL）：（1）那些报告生活质量较为积极的患者和（2）那些报告生活质量较为消极的患者。 方法 100名ALS患者参与了在一家ALS诊所进行的这项横断面描述性研究。生活质量通过两种方式进行分级：（1）一个关于当前生活质量的总体问题，给出四个选项（生活好得不能再好、通常较好、有时较好、不好），研究人员将其分为两组：生活质量较积极组和生活质量较消极组；（2）患者对一份25项内部生成的开放式调查问卷的回答。阿佩尔ALS评定量表用于测量体力和身体功能的客观数据。 结果 100名患者（68名男性和32名女性）参与了研究，平均年龄为58.2岁（范围29 - 82岁）。平均病程为1.9年（范围0.08 - 15年）。报告生活质量较积极的患者更年轻，病程更短，疾病严重程度更低（p < 0.05）。那些认可生活质量较积极的患者报告经济状况更充足，对疾病特征的压力更小（p < 0.05）。 结论 疾病特征确实会影响ALS患者的生活质量，但它们并非唯一的关注点。在测量ALS患者的生活质量时，除了疾病症状外，还需要识别心理社会因素、人格特质和精神因素的独特特征，并在整个患病过程中与患者及其家属进行讨论。