Tradução e adaptação transcultural do questionário PEDSQL "Neurofibromatosis type 1 module 3.0" para pacientes com neurofibromatose tipo 1
Data
2023-02-17
Autores
Machado, Marília Aparecida Silva Oliveira [UNIFESP]
Orientadores
Caran, Eliana Maria Monteiro [UNIFESP]
Tipo
Dissertação de mestrado
Título da Revista
ISSN da Revista
Título de Volume
Resumo
Introdução: A neurofibromatose tipo1 (NF1) é uma doença genética que compromete 1: 3000 nascidos vivos, não tem tratamento medicamentoso, e a qualidade de vida dos pacientes depende do quadro clínico, psíquico e social. Objetivo: Traduzir para o português do Brasil e adaptar culturalmente o questionário “Scaling and scoring of the Pediatric Quality of Life Inventory” PedsQL Neurofibromatosis” para portadores de NF1 de 5 a 25 anos e seus pais/cuidadores. Método: O estudo foi desenvolvido em 4 fases – Tradução para português da versão original em inglês. – Retrotradução para idioma inglês. – Avaliação do resultado por 15 profissionais, médicos e enfermeiros, de várias regiões do Brasil – Pré-teste: aplicação do questionário em portadores de NF1. As traduções foram analisadas por grupo de especialistas e através do índice de validade de conteúdo (IVC) e Kappa. Resultados: A tradução e adaptação cultural do questionário PedsQLTM NF1 para pacientes de 5 a 25 anos portadores de NF1 foi realizada de forma adequada, segundo IVC (0,75), KAPPA (0,6) e opinião do grupo de analistas. Foram necessários pequenos ajustes principalmente no questionário dos familiares para facilitar o entendimento, por exemplo, a palavra “temer” foi substituída por “tem medo”. Do pré-teste participaram 46 familiares com idade variando de 28 a 54 anos, média de 40,6 anos, mediana de 42 anos e 42 pacientes idade de 5 a 25 anos com média de 10,5 anos e mediana de 10 anos. 5 pacientes com alteração do comportamento (TEA e hiperatividade) não conseguiram responder ao questionário. Conclusão: A tradução e adaptação cultural do questionário PedsQLTM NF1 foram etapas satisfatoriamente concluídas.
Introduction: Neurofibromatosis type 1 (NF1) is a frequent genetic disease without drug treatment, and the quality of life of patients depends on the clinical, psychological and social conditions. Objective: Translate into Brazilian Portuguese and culturally adapt the “Scaling and scoring of the Pediatric Quality of Life Inventory” PedsQL Neurofibromatosis” questionnaire for patients with NF1 aged 5 to 25 years and their parents/caregivers. Method: The study was developed in 4 phases – Translation into Portuguese. – Back translation to English language. – Evaluation of the result by physicians and nurses, from several regions of Brazil – Pre-test: application of the questionnaire in patients with NF1. The translations were analyzed by experts and through the content validity index (CVI) and Kappa. Results: The translation and cultural adaptation of the PedsQLTM NF1 questionnaire for patients aged 5 to 25 years with NF1 was performed properly, according to IVC (0.75), KAPPA (0.6) and analysts' opinion. Adjustments were necessary in the family members' questionnaire to facilitate understanding, for example, the word “worrying” was translated into Portuguese as “temer” and later replaced by “tem medo”. The pre-test enrolled 46 family members aged between 28 and 54 years, mean age of 40.6 years, median of 42 years and 42 patients aged between 5 and 25 years, mean of 10.5 years and median of 10 years. 5 patients with behavioral changes (autism spectrum disorder - ASD - and hyperactivity were unable to respond to the questionnaire. Conclusion: The translation and cultural adaptation of the PedsQLTM NF1 questionnaire were successfully completed.
Introduction: Neurofibromatosis type 1 (NF1) is a frequent genetic disease without drug treatment, and the quality of life of patients depends on the clinical, psychological and social conditions. Objective: Translate into Brazilian Portuguese and culturally adapt the “Scaling and scoring of the Pediatric Quality of Life Inventory” PedsQL Neurofibromatosis” questionnaire for patients with NF1 aged 5 to 25 years and their parents/caregivers. Method: The study was developed in 4 phases – Translation into Portuguese. – Back translation to English language. – Evaluation of the result by physicians and nurses, from several regions of Brazil – Pre-test: application of the questionnaire in patients with NF1. The translations were analyzed by experts and through the content validity index (CVI) and Kappa. Results: The translation and cultural adaptation of the PedsQLTM NF1 questionnaire for patients aged 5 to 25 years with NF1 was performed properly, according to IVC (0.75), KAPPA (0.6) and analysts' opinion. Adjustments were necessary in the family members' questionnaire to facilitate understanding, for example, the word “worrying” was translated into Portuguese as “temer” and later replaced by “tem medo”. The pre-test enrolled 46 family members aged between 28 and 54 years, mean age of 40.6 years, median of 42 years and 42 patients aged between 5 and 25 years, mean of 10.5 years and median of 10 years. 5 patients with behavioral changes (autism spectrum disorder - ASD - and hyperactivity were unable to respond to the questionnaire. Conclusion: The translation and cultural adaptation of the PedsQLTM NF1 questionnaire were successfully completed.
Descrição
Citação
MACHADO, Marília Aparecida Silva Oliveira. Tradução e adaptação transcultural do questionário PEDSQL “Neurofibromatosis type 1 module 3.0” para pacientes com neurofibromatose tipo 1. 2023. 101 f. Dissertação (Mestrado em Pediatria e Ciências Aplicadas à Pediatria) - Escola Paulista de Medicina, Universidade Federal de São Paulo (UNIFESP). São Paulo, 2023.