ABSTRACT
Introduction: Amyotrophic lateral sclerosis (ALS) is marked by a gradual decline in functional capacity and increased morbidity from respiratory infections due to progressive loss of muscle strength. The regular monitoring by a multidisciplinary team, adjustments in ventilatory parameters, and maintenance of NIV are essential for disease management. This study aimed to monitor functional progression of patients with ALS during COVID-19 pandemic using telemedicine. Method(s): This is longitudinal case series with patients with ALS. Five assessments were performed, being two occurred in-person and three were performed remotely during the COVID-19 pandemic. First assessments included pulmonary function, respiratory muscle strength, functionality (ALSFRS-R), rate of disease progression, and disease staging. The further assessments included a clinical evaluation form, use and parameters of NIV. Result(s): We followed 11 patients for 30 months. Most patients had spinal onset ALS (72.7%), were male (72.7%), had a median age of 51 years. Total ALSFRS-R (P < 0.01) and motor domain (P < 0.01) scores reduced during the pandemic. However, total and domain scores were not different between patients with spinal and bulbar onset. According to ALSFRS-R, 90.9% of patients presented a slow disease progression. Most patients used NIV at night and during a half-day shift. Conclusion(s): The telemedicine facilitates monitoring clinical and seems to influence functional progression of patients with ALS during COVID-19 pandemic. Patients with ALS have a slow rate of disease progression and a functional decrease during 14 months follow-up period.