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

Resumen

Objective: To describe the cross-cultural adaptation of the
"Questionnaire about Care for People with Duchenne Muscular
Dystrophy" to Brazilian Portuguese and our findings about the DMD
care access in a group of 43 patients assisted in an University
Hospital in Rio de Janeiro.
Method: Guidelines for best practice in translation and cultural
adaptation were followed. Validation of the adapted questionnaire
was verified in a group of 43 patients with Duchenne Muscular
Dystrophy (DMD) assisted in the Child Neurology Department of a
university hospital in Rio de Janeiro.
Results: Once the questionnaire was cross-adapted into Brazilian
Portuguese, information was obtained on disease progression,
access to recommended care and difficulties encountered in
maintaining treatment. This allowed comparison with previously
published national and international data.
Conclusion: The adapted version of the CARE-NMD questionnaire
for Brazilian Portuguese has the potential to support the work done
in neuromuscular centers and health managers in Brazil. It provides
a picture of access to care in our country, and allows exchanging
updated information between Brazilian and international
neuromuscular centers.