Objective: Amyotrophic lateral sclerosis (ALS) has profound effects on people with ALS (PALS) and caregivers. There is a paucity of research detailing and comparing PALS and caregiver day-to-day perspectives of ALS. Methods: A survey developed collaboratively by The ALS Association and a panel of experts in ALS care was designed to broadly sample the experience of PALS and caregivers with respect to physical and emotional symptoms, the efficacy of treatment approaches, and goals for future treatments. Specific physical symptoms assessed consisted of fatigue, pain, weakness, shortness of breath, difficulty sleeping, speech problems, depression and other mood changes, and cognitive changes. PALS, caregivers of living patients with ALS (C-LPALS), and caregivers of deceased patients with ALS (C-DPALS) were contacted by email to participate in a 30-minute online survey. Results: 887 PALS, 444 C-LPALS, and 193 C-DPALS responded to the survey. In comparison to PALS, C-LPALS perceived that PALS had significantly higher rates of all surveyed symptoms except for pain and weakness. Caregivers self-reported higher stress levels than PALS (p < 0.001). 35% (135/383) of caregivers reported experiencing a devastating or near devastating financial impact of ALS and 64% (247/383) of caregivers felt their own health had worsened. Caregivers were significantly less likely to perceive a positive response to treatment in comparison to PALS (p < 0.001). Conclusions: PALS and caregivers report a number of symptoms beyond weakness that affect daily life which may be targets of future interventions. There are opportunities to improve services and care for caregivers to reduce the burden of illness.

目的：肌萎缩侧索硬化症（ALS）对肌萎缩侧索硬化症（ALS）患者和看护者有着深远的影响。很少有研究详细说明和比较 PALS 和护理人员对 ALS 的日常观点。方法：由 ALS 协会和 ALS 护理专家小组合作开发的一项调查旨在广泛采样 PALS 和护理人员在身体和情绪症状、治疗方法的有效性和未来治疗目标方面的经验。评估的特定身体症状包括疲劳、疼痛、虚弱、呼吸急促、睡眠困难、言语问题、抑郁和其他情绪变化以及认知变化。通过电子邮件联系了 PALS、ALS 活着患者 (C-LPALS) 的照顾者和 ALS 已故患者 (C-DPALS) 的照顾者，以参与一项 30 分钟的在线调查。结果：887 PALS、444 C-LPALS 和 193 C-DPALS 对调查做出了回应。与 PALS 相比，C-LPALS 认为，除了疼痛和虚弱外，PALS 的所有调查症状发生率都显着更高。照料者自我报告的压力水平高于 PALS ( p  < 0.001)。35% (135/383) 的护理人员报告称经历了 ALS 的毁灭性或接近毁灭性的财务影响，64% (247/383) 的护理人员认为自己的健康状况恶化。与 PALS 相比，护理人员对治疗产生积极反应的可能性显着降低（p  < 0.001）。结论：PALS 和护理人员报告了许多影响日常生活的症状，这些症状可能是未来干预的目标。有机会改善对护理人员的服务和护理，以减轻疾病负担。