Avanços da fisioterapia respiratória na Esclerose Lateral Amiotrófica: técnicas e assistência

Abstract

Amyotrophic lateral sclerosis (ALS) is characterized by signs and symptoms of upper and lower motor neuron degeneration. This leads to progressive weakness of the bulbar, limb, thoracic, and abdominal muscles, causing loss of ambulation and functionality, swallowing difficulties, respiratory muscle dysfunction, and death due to ventilatory failure. It is one of the most disabling neuromuscular diseases, with a considerably rapid and fatal progression. Median survival from the onset of symptoms is approximately 3 to 5 years, but some patients survive longer, with slow disease progression. Since there is no medical treatment that reverses or significantly alters the progression of the disease, the treatment of ALS remains symptomatic, performed by a multidisciplinary team, even requiring the aid of mechanical ventilation when respiratory failure sets in. Other important aspects of optimizing respiratory care must be considered, such as the prevention and treatment of respiratory infections that contribute to improving patients’ quality of life. Currently, many Brazilian states do not offer, along with Non-Invasive Ventilation, a program to optimize patient care in general. Therefore, care for patients with ALS involves a care model and health education for their families. From a clinical point of view and in the scope of respiratory care, we propose the implementation of a respiratory care program with comprehensive care for patients with ALS, extending to their homes, seeking to increase their survival. This thesis is an integral part of the RevELA project, an initiative of the Federal University of Rio Grande do Norte (UFRN), through the Laboratory of Technological Innovation in Health (LAIS), financed by the Ministry of Health and in partnership with the Pneumocardiovascular Lab (UFRN). To meet the needs of patients with Amyotrophic Lateral Sclerosis (ALS) in a multidisciplinary and technological way. Related to respiratory physiotherapy, the goals set include a clinical trial for the implementation of a home care program in ALS, a systematic review of the effects of respiratory physiotherapy in ALS, with the publication of articles, Guidelines for recommendations for respiratory management in these patients and education in health through training and guidance for caregivers and physiotherapists with the development of booklets and courses in person and via a virtual platform, which are part of the care in interventions