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ASAS/EULAR recommendations for the management of ankylosing spondylitis - the patient version.
  1. U Kiltz (home{at}kiltz-online.de)
  1. Rheumazentrum Ruhrgebiet, Germany
    1. DMFM van der Heijde (d.vanderheijde{at}kpnplanet.nl)
    1. Leiden University Medical Center, Netherlands
      1. H Mielants
      1. Gent University Hospital, Belgium
        1. E Feldtkeller
        1. Ankylsong Spondylitis International Federation Munich, Germany
          1. J Braun (j.braun{at}rheumazentrum-ruhrgebiet.de)
          1. Rheumazentrum Ruhrgebiet, Germany

            Abstract

            Objectives: The ASAS/EULAR recommendations for the management of ankylosing spondylitis have been developed by rheumatologists for a target population of health professionals.. ASAS and EULAR agreed to extend their cooperation by translating the recommendations to a language that can be easily understood by patients in order to further disseminate and evaluate the recommendations.

            Methods: In cooperation with patient organizations 17 European and one Canadian AS patients were invited to attend a meeting in February 2008. As a starting point the original publication and a version created by Canadian AS patients were used. To improve the understanding of potential problems data on the evaluation of a recent German translation were presented. After intensive discussions the wording was adjusted and a vote was held on the novel wording of the recommendations aiming for > 80% agreement on each sentence. Finally, patients were asked to indicate their level of agreement with the content of the recommendations.

            Results: Ten recommendations were successfully translated into a patient understandable version. The original text was changed in most cases. In all but one case (recommendation No. 4) there was broad agreement with the proposed translation. The overall agreement with the content of the recommendations was high: 8.7 ± 0.6.

            Conclusion: For the first time, EULAR recommendations were successfully converted into a patient understandable language version by a large international group of patients in collaboration with rheumatologists. The evaluation showed broad agreement. Translations into different languages and further dissemination in individual countries will be performed.

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