Cross-cultural adaptation and validation for the brazilian population of an instrument to evaluate the quality of life of Amiotrophic lateral sclerosis' carrier patients ("amyotrophic lateral sclerosis specific quality of life" - ALSSQOL-20)

Abstract

The amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease, cureless and without a defined pathology. It is a quickly progressive illness associated with the lost of upper and lower motor neurones. There is a need to make a translation, culture adaptation and validation of a specific life quality tool to patients with ALS, which largely involves physics, social, psycology and spiritual domains, such as the Amyotrophic Lateral Sclerosis Specific Quality of Life (ALSSQOL-20). This study has the purpose to make a version of ALSSQOL-20 adapted to the brasilian's social and cultural context. In order to create the questionnaire version in portuguese, we will use a six-fases procedure proposed by Beaton (2000). All participants must fill the inclusion and exclusion criteria and agree to submit yourself for a ambulatorial attendance on Ambulatório de Terapia Antálgica e Cuidados Paliativos at the Hospital das Clínicas in Botucatu, Faculdade de Medicina de Botucatu / UNESP or at the Ambulatório de Doenças Neuromusculares at the Hospital São Paulo in São Paulo, Universidade Federal de São Paulo / UNIFESP. The research will respect all the ethical procedures and will be send to the Ethical Research Committee of Faculdade de Medicina de Botucatu at the Universidade Estadual Paulista and to the Ethical Research Committee of Universidade Federal de São Paulo. (AU)