Article Text

ASAS/EULAR recommendations for the management of ankylosing spondylitis: the patient version
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  1. U Kiltz1,
  2. D van der Heijde2,
  3. H Mielants3,
  4. E Feldtkeller4,
  5. J Braun1,
  6. on behalf of the PARE/EULAR patient initiative group
  1. 1 Rheumazentrum Ruhrgebiet, St. Josefs-Krankenhaus, Herne, Germany
  2. 2 Leiden University Medical Center, Leiden, The Netherlands
  3. 3 Department of Rheumatology, Gent University Hospital, Gent, Belgium
  4. 4 Ernst Feldtkeller, Ankylosing Spondylitis International Federation, Munich, Germany
  1. Correspondence to Professor J Braun, Rheumazentrum Ruhrgebiet, St Josefs-Krankenhaus, Landgrafenstr 15, 44652 Herne, Germany; j.braun{at}rheumazentrum-ruhrgebiet.de

Abstract

Background: The ASAS/EULAR (Assessment of SpondyloArthritis International Society/European League Against Rheumatism) recommendations for the management of ankylosing spondylitis (AS) have been developed by rheumatologists for a target population of health professionals.

Objective: To extend the cooperation between ASAS and EULAR by translating the recommendations into a language that can be easily understood by patients in order to further disseminate and evaluate the recommendations.

Methods: In cooperation with patient organisations 18 patients with AS (17 European, one Canadian) were invited to attend a meeting in February 2008. As a starting point the original publication and a version created by Canadian patients with AS 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 new 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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Supplementary materials

Footnotes

  • ▸ Additional data are published online only at http://ard.bmj.com/content/vol68/issue9

  • Funding The consensus meeting in Zürich was financially supported by EULAR. There are no other financial disclosures. The sponsors had no role in voting, or in developing the final document.

  • Competing interests None.

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