[German patient version of the ASAS/EULAR recommendations for the management of ankylosing spondylitis]

Abstract

The evidence-based recommendations on the management of ankylosing spondylitis (AS) have enjoyed a high level of acceptance and circulation in Germany, as well as in other European countries. To make patient participation in the decision-making process regarding their disease easier, as well as to strengthen the physician-patient relationship, the ASAS and EULAR have set up an initiative to formulate a patient-friendly version of the recommendations, initially in English. In order that this lay version can also be used in German-speaking countries, a group predominantly comprising patients was formed to ensure that the German translation of this version has the broadest possible basis. In cooperation with the German (DVMB), Austrian (OVMB) and Swiss Morbus Bechterew Associations (SVMB), as well as the German Rheumatology League, patients from Germany, Austria and Switzerland with appropriate English skills were invited to a meeting in 2008. The aim of the translation was to leave the content unchanged while finding a level of speech easily understandable to the lay person. The translated text was considered as accepted when a minimum of 12 patients (>80%) gave their approval on the wording of the translation of individual recommendations in an open vote. The rheumatologist given the function of moderator was not entitled to vote. The level of approval for each recommendation was determined (0: no approval to 10: full approval). The 14 patients were able to translate the English patient version into German. Choice of words and style of speech were discussed intensively. Acceptance of the translation of the 10 recommendations was generally high. The content was clearly accepted with an approval rate of 8.4+/-1.6. This was the first time that patients, in cooperation with rheumatologists, have translated an international patient version on AS management into German under controlled conditions. The translation text was approved by the majority in terms of both form and content. Acceptance and circulation of the German patient version should be evaluated in the near future.