Qualidade de Vida de Pacientes com Esclerose Lateral Amiotrófica

Abstract

The Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that affects the motor neuron, progressive, fatal and incurable, caused by multiple factors, affecting individuals after their fifth decade of life. The dissertation was built in the type of article and consists of two articles. O Article 1 it is an integrative literature review aimed to select and critically analyze the publications that evaluated the quality of life of patients with Amyotrophic Lateral Sclerosis (ALS) by through the IT Assessment Questionnaire (ALSAQ-40 and / or ALSAQ-5) between 2004 and 2015. We identified 08 articles in the MEDLINE and PubMed databases. The most affected domains of quality of life of patients were physical mobility and activities of daily living. In patients with ALS bulbar, communication and power were most affected. Problems with health care and the lack of social support to the caregiver negatively impacted the quality of life. Emotional stress correlated with communication, physical mobility and disease progression in patients with artificial respiration and feeding, but is not directly related to advances in physical deterioration but how the patient processes the experiences of it. The feeling more negative impact on patient quality of life was hopeless and less negative impact was depression. Article 2 it is a descriptive, cross-sectional study with a quantitative approach, in order to analyze the quality of life of patients with ALS through ALSAQ-40 instrument. Participated in 30 ALS patients from a rehabilitation center and rehabilitation in Goias, Brazil. It was used as the instrument ALSAQ-40, of sociodemographic and clinical profile plug, Economic Classification Criteria of Brazil (CCEB). The patients had all areas of ALSAQ-40 affected, being, physical mobility (76.27) and activities of daily living (73.00) the most affected, and feeding (52,20) the least affected. Female patients, aged less than 50 years, with three or more children, without their own mode of transport, without health insurance, with time of diagnosis to the date of interview higher or equal to one year, they wore seat wheels and home care had worse quality of life. We conclude that the use of specific tool for assessing the patient's quality of life with ALS, ALSAQ-40 is suitable for development of strategies and action plans by the multidisciplinary team in improving care and quality of life of these patients. Knowing the reality they live in ALS patients may contribute to the implementation of policies for motor neuron diseases, improving multidisciplinary care and access to public services, improved public transportation and dedicated to patient technology in order to foster greater independence in ADLs due to greater impairment of quality of life in this regard.