Evaluate the quality of life of Amyotrophic Lateral Sclerosis carrier patients

Abstract

Amyotrophic Lateral Sclerosis (ALS) is an incurable neurodegenerative disease with no defined pathology and is rapidly progressive associated with loss of upper and lower motor neurons. There is a need to perform translation, cultural adaptation and validation of a specific quality of life instrument for patients with amyotrophic lateral sclerosis, which broadly involves the physical, social, psychological and spiritual domains, such as Amyotrophic Lateral Sclerosis Specific Quality of Life (ALSSQOL-20). The present study aims to produce a version of the instrument ALSSQOL-20 in Portuguese, adapted to the Brazilian cultural context. For the creation of the Portuguese version of the ALSSQOL-20 instrument, the cultural and linguistic adaptation procedures proposed by Beaton (2000) will be carried out, divided into six phases. The research participants should meet the inclusion and exclusion criteria and follow up at the Anesthesia and Anesthesia Care Clinic of Botucatu Hospital, Botucatu Medical School/UNESP or at the Neuromuscular Disease Outpatient Clinic of the São Paulo Hospital, Federal University of São Paulo/UNIFESP. The research will comply with all ethical procedures and will be sent to the Research Ethics Committee of Botucatu Medical School of Universidade Estadual Paulista and to the Ethics Committee of the Federal University of São Paulo.