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
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2019-02-26
Autores
Gayoso, Maisa Vitoria [UNESP]
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Universidade Estadual Paulista (Unesp)
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Introdução: A Esclerose Lateral Amiotrófica (ELA) é uma doença neurodegenerativa, incurável, sem fisiopatologia definida e rapidamente progressiva que é associada à perda dos neurônios motores superiores e inferiores. Como a avaliação da qualidade de vida dos pacientes com ELA é desafiadora diante do impacto da apresentação clínica da doença, há uma grande dificuldade entre os profissionais que atendem estes pacientes em realizar medidas objetivas com os questionários atualmente disponíveis no Brasil. Objetivo: Produzir e validar uma versão do instrumento Amyotrophic Lateral Sclerosis Specific Quality of Life – Short Form (ALSSQOL-SF) em português, adaptado ao contexto cultural brasileiro. Método: Estudo de adaptação transcultural e validação, realizado nas cidades de Botucatu e de São Paulo no período de março de 2017 a novembro de 2018, de acordo com as diretrizes de adaptação cultural e linguística proposto por Beaton et al. (2000), dividido em seis passos. Para a validação de construto foram utilizados os instrumentos The World Health Organization Quality of Life (WHOQOL-bref) e a Escala de Classificação Funcional da Esclerose Lateral Amiotrófica Revisada (ECFELA-R). Para a análise das correlações entre as pontuações do ALSSQOL-SF, WHOQOL-bref e ECFELA-R, foram calculadas correlações de Spearman. O projeto foi aprovado pelo Comitê de Ética em Pesquisa da Faculdade de Medicina de Botucatu – UNESP e da Universidade Federal de São Paulo - UNIFESP, conforme pareceres nº 2.047.943 e nº 2.069.401. Resultados: Todas as fases do processo de adaptação transcultural foram realizadas sem intercorrência. Participaram 30 indivíduos no teste piloto, e o instrumento “Questionário Breve Específico de Qualidade de Vida para Pacientes com ELA (QVELA-20/Br)” foi desenvolvido. No momento de validação participaram 100 pacientes, em sua maioria do sexo masculino (58%) e com mediana de idade de 59 anos. A versão do questionário desenvolvida correlacionou-se de forma positiva e forte com o WHOQOL-bref e de forma positiva e fraca com o ECFELA-R, conforme esperado. Conclusão: Foi possível produzir e validar uma versão do instrumento ALSSQOL-SF em português, adaptado ao contexto cultural brasileiro.
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.
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.
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Tradução, Estudos de validação, Esclerose Amiotrófica Lateral, Qualidade de vida, Inquéritos e questionários, Translating, Validation studies, Quality of life, Amyotrophic Lateral Sclerosis, Surveys and questionnaires