Cross-cultural adaptation of the "Questionnaire about Care for People with Duchenne Muscular Dystrophy" to Brazilian Portuguese

Objective: To describe the cross-cultural adaptation of the"Questionnaire about Care for People with Duchenne MuscularDystrophy" to Brazilian Portuguese and our findings about the DMDcare access in a group of 43 patients assisted in an UniversityHospital in Rio de Janeiro.Method: Guidelines for best practice in translation and culturaladaptation were followed. Validation of the adapted questionnairewas verified in a group of 43 patients with Duchenne MuscularDystrophy (DMD) assisted in the Child Neurology Department of auniversity hospital in Rio de Janeiro.Results: Once the questionnaire was cross-adapted into BrazilianPortuguese, information was obtained on disease progression,access to recommended care and difficulties encountered inmaintaining treatment. This allowed comparison with previouslypublished national and international data.Conclusion: The adapted version of the CARE-NMD questionnairefor Brazilian Portuguese has the potential to support the work donein neuromuscular centers and health managers in Brazil. It providesa picture of access to care in our country, and allows exchangingupdated information between Brazilian and internationalneuromuscular centers.