Transcultural Adaptation of the World Heart Federation Rheumatic Heart Disease Register Database in Brazil

  • Dr Regina Müller, National Institute of Cardiology - Rio de Janeiro - Brazil, Brazil
  • Dr Regina Xavier, National Institute of Cardiology - Rio de Janeiro - Brazil, Brazil
  • Dr Maria Kuschnir, National Institute of Cardiology - Rio de Janeiro - Brazil, Brazil
  • Dr Vitor Azevedo, National Institute of Cardiology - Rio de Janeiro - Brazil, Brazil
  • Dr Marco Santos, National Institute of Cardiology - Rio de Janeiro - Brazil, Brazil
  • Dr Denizar Vianna, State University of Rio de Janeiro - Rio de Janeiro - Brazil, Brazil
  • Dr Maria Leite, Bonsucesso General Hospital - Rio de Janeiro - Brazil, Brazil
  • Dr Eliane Lucas, Bonsucesso General Hospital - Rio de Janeiro - Brazil, Brazil

    • Background: Rheumatic Fever (RF) remains prevalent in industrializing countries, and Rheumatic heart disease (RHD) contributes with 332.000 estimated annual deaths worldwide (WHO 2004). In Brazil RHD is responsible for high morbimortality and great social impact over the society. Nevertheless any official register supports a surveillance system for RHD in Brazil.
    Objective: To adapt the World Heart Federation (WHF) database for RF/RHD in Brazil.
    Methods: The WHO guided process of adaptation included: 1) translation from English to Portuguese by two researchers; 2) back translation by two other researchers; 3) Experts panel consensus to judge triggers and translations doubts; 4) pre-test and pilot study with 30 patients from 2 tertiary centers; 5) Experts analysis of pilot results; 6) contact with WHF database responsible to clarify doubts and approve local modifications; 7) pilot study with other 30 medical files in same centers using final adapted database.
    Results: WHF database was chosen to be adapted to our setting, because it is simple, limited, exclusive; usable by general practitioners, respects published classifications and provides synonyms for similar items. Translation from brought no difficulty, but we needed to include some data based on Brazilian practice as secondary prophylaxis each 2 weeks. We changed some terms for local cultural adaptation and informed WHF about these modifications. The database was approved for use after the second pilot study.
    Conclusion: The consolidation of RF surveillance system will expand knowledge about RF/RHD and enable statistical analysis and comparison among centers contributing to define health care policies for RF/RHD in Brazil.