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)

• Grant number: 16/22437-0
• Support type: Scholarships in Brazil - Master
• Effective date (Start): June 01, 2017
• Effective date (End): February 28, 2019
• Field of knowledge: Health Sciences - Medicine
• Cooperation agreement: Coordination of Improvement of Higher Education Personnel (CAPES)
• Principal researcher: Guilherme Antonio Moreira de Barros
• Grantee: Maisa Vitória Gayoso
• Home Institution: Faculdade de Medicina (FMB). Universidade Estadual Paulista (UNESP). Campus de Botucatu. Botucatu , SP, Brazil

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)

Scientific publications

(References retrieved automatically from Web of Science and SciELO through information on FAPESP grants and their corresponding numbers as mentioned in the publications by the authors)

GAYOSO, MAISA VITORIA; DOMINGUES, FLAVIA SEULLNER; FRANCA JUNIOR, MARCONDES CAVALCANTE; FELGOISE, STEPHANIE H.; BULLE OLIVEIRA, ACARY SOUZA; MOREIRA DE BARROS, GUILHERME ANTONIO. Cross-cultural adaptation and validation for the Brazilian population of the instrument Amyotrophic Lateral Sclerosis-Specific Quality of Life-Short Form (ALSSQOL-SF). QUALITY OF LIFE RESEARCH, OCT 2019. Web of Science Citations: 0.

Academic Publications

(References retrieved automatically from State of São Paulo Research Institutions)

GAYOSO, Maisa Vitória. Adaptação transcultural e validação para a população brasileira do instrumento Amyotrophic Lateral Sclerosis Specific Quality of Life – Short Form (ALSSQOL-SF) para a avaliação da qualidade de vida em indivíduos com esclerose lateral amiotrófica. 2019. Master's Dissertation - Universidade Estadual Paulista "Júlio de Mesquita Filho" Faculdade de Medicina..