Cross-cultural adaptation and validation for the Brazilian population of the instrument Amyotrophic Lateral Sclerosis Specific Quality of Life - Short Form (ALSSQOL-SF) for the assessment of quality of life in individuals with amyotrophic lateral sclerosis

Author(s)

Maisa Vitoria Gayoso

• Document type: Master's Dissertation
• Press: Botucatu. 2019-03-06.
• Institution: Universidade Estadual Paulista (Unesp). Faculdade de Medicina. Botucatu
• Defense date: 2019-02-26
• Advisor: Guilherme Antonio Moreira de Barros

Abstract

Introduction: Amyotrophic Lateral Sclerosis (ALS) is an incurable, neurodegenerative, non- defined pathophysiology and rapidly progressive disease that is associated with loss of upper and lower motor neurons. Since the assessment of the quality of life of patients with ALS is a challenge in face to the impact of clinical presentation of this disease, objective measurement with the questionnaires that are currently available in Brazil is a difficult task to be performed by professionals who assist these patients. Aim: To produce and validate the version of the instrument Amyotrophic Lateral Sclerosis Specific Quality of Life - Short Form (ALSSQOL-SF) into Portuguese, adapted to the Brazilian cultural context. Method: It is a cross-cultural adaptation and validation study, carried out in the cities of Botucatu and Sao Paulo from March, 2017 to November, 2018, according to the six steps guidelines of cultural and linguistic adaptation proposed by Beaton et al. (2000). The World Health Organization Quality of Life (WHOQOL-bref) and the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ECFELA-R) were used for construct validation. For the analysis of the correlations between the ALSSQOL-SF, WHOQOL-bref and ECFELA-R scores, Spearman correlations were calculated. The project was approved by the Research Ethics Committee of the Faculty of Medicine of Botucatu - UNESP and of the Federal University of São Paulo - UNIFESP, according to records nº 2.047.943 and nº 2.069.401. Results: All steps of the transcultural adaptation process were performed without intercurrence. The pilot test had the participation of 30 individuals, and the “Questionário Breve Específico de Qualidade de Vida para Pacientes com ELA (QVELA-20/Br)” tool was developed. During the validation phase 100 patients were included, most of them male (58%) and with a median age of 59 years old. The created version of the questionnaire correlated in a positive and strong manner with the WHOQOL-bref and had a positive and weak correlation with ECFELA-R, as expected. Conclusion: The study produced and validated a version of the instrument ALSSQOL-SF into Portuguese that is adapted to the Brazilian cultural context. (AU)

• FAPESP's process: 16/22437-0 - 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)
• Grantee: Maisa Vitória Gayoso
• Support Opportunities: Scholarships in Brazil - Master