The effects of social isolation on the functionality of patients with Amyotrophic Lateral Sclerosis during the COVID-19 pandemic in Brazil.
Amyotrophic Lateral Sclerosis, telemedicine and COVID-19
Amyotrophic Lateral Sclerosis (ALS) is a neuromuscular disease (NMD), marked by degeneration of the upper motor neuron and lower motor neuron . This degeneration causes progressive motor deficits that worsen within weeks or months. Due to the existing respiratory impairment, individuals with ALS became a population that required special care during the COVID-19 pandemic in the years 2020 and 2021.The main form of prevention during this period was social isolation, which resulted in the absence of face-to-face care for people with ALS and consequently the greater use of telemedicine strategies for monitoring these individuals. The present study aims to investigate, through telemedicine instruments, how social isolation affected the functionality and respiratory evolution of patients with ALS during the COVID-19 pandemic in Brazil. This is a longitudinal study that will be conducted between April 2020 and April 2021, the sample was composed of patients, of both sexes, accompanied by a multidisciplinary team of the University Hospital Onofre Lopes (HUOL) with the medical diagnosis of ALS according to the criteria of the El Escorial World Federation of Neurology, who had some means of access to the Internet and who agreed to participate in the research. The monitoring was carried out through the Google Meet platforms, Telehealth System of the Federal University of Rio Grande do Norte (UFRN) or by video call via Whatsapp, the platform was chosen according to the individual's preference. During the monitoring, an evaluation was performed through a clinical evaluation form that had questions about the respiratory condition, signs and symptoms of nocturnal hypoventilation, as well as about aspects related to the use of Noninvasive Ventilation (NIV). The questionnaire on als Functional Rating Scale-Revised (ALSFRS-R/ BR) functionality was also applied and the individuals received prevention guidance against COVID-19 and/or other guidelines according to the clinical condition. The statistical analysis was performed using the Software Statistical Package for Social Sciences 2.0, initially a descriptive statistic was performed of the data obtained so far. To date, 49 evaluations of 18 individuals (14 men) have been performed, where 38.9% had prescribed NIV with an average ALSFRS-R/BR score of 28.5 points and respiratory domain of the same scale had an average of 9 points.