Projeto revELA: cuidados motores para indivíduos com Esclerose Lateral Amiotrófica

Abstract

Introduction: Physical therapists often face challenges in creating appropriate treatment plans for individuals with Amyotrophic Lateral Sclerosis (ALS). This is due to the significant variation in symptoms and the individual progression of the condition. Objective: To analyze aspects related to the motor symptoms of individuals with ALS, and the best evidence for motor care for this population. Methods: Three studies were conducted, resulting in 5 articles (1 published, 2 submitted, and 2 for immediate submission). Study 1 consists of a systematic review (SR) comprising a protocol (published) and the final results of the SR. The SR was developed following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards and evaluated the effectiveness of physiotherapy practices on functionality, fatigue, and quality of life symptoms in ALS. Study 2 comprises the development of a clinical practice guideline (CPG) that followed the approach of the Scottish Intercollegiate Guidelines Network (SIGN) to assess the recommendations. Outcomes of functionality, pain, fatigue, mobility, quality of life, muscle strength, and assistive technologies for ALS were analyzed. Study 3 had a cross-sectional design and resulted in a cross-sectional study that examined the relationships between fatigue and other clinical symptoms (functionality, cognition, and pain), as well as covariates considered potential confounders for the associations under study. Additionally, a multimethods study was conducted with a prospective cross-sectional and systematic retrospective design that outlined the pain and fatigue profile of a Brazilian ALS sample and provided an assessment of the evidence regarding physiotherapy practices for the aforementioned symptoms. Results and Conclusions: The SR indicated that physiotherapy practices are effective for functionality in ALS in the short term; however, the effects on fatigue and quality of life remain uncertain. The CPG inferred that physiotherapy practices may result in improvement for functionality in individuals with ALS; however, the effects for all other outcomes remain uncertain. It is worth noting that serious harm was not observed in physiotherapy practices for ALS. The crosssectional study confirmed that fatigue is related to functionality, cognition, and pain in ALS, and that covariates such as age, sex, education, and disease duration may also influence this relationship. The multimethods study indicated that a Brazilian ALS sample has moderate levels of pain and fatigue and that physiotherapy practices to improve these two outcomes remain uncertain. These studies are important for the development of public health policies and to guide future research that further elucidates the effectiveness of physiotherapy practices on ALS symptoms.