Kiltz U, van der Heijde D, Mielants H, Feldtkeller E, Braun J
Rheumazentrum Ruhrgebiet, St Josefs-Krankenhaus, Herne 44652, Germany.
Ann Rheum Dis. 2009 Sep;68(9):1381-6. doi: 10.1136/ard.2008.096073. Epub 2008 Oct 17.
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.
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.
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.
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).
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.
脊柱关节炎国际协会/欧洲抗风湿病联盟（ASAS/EULAR）针对强直性脊柱炎（AS）管理制定的建议是由风湿病专家为健康专业人员这一目标群体制定的。
通过将这些建议翻译成患者易于理解的语言，以进一步传播和评估这些建议，从而扩大ASAS与EULAR之间的合作。
2008年2月，与患者组织合作，邀请了18名AS患者（17名欧洲患者，1名加拿大患者）参加会议。最初以原始出版物以及加拿大AS患者创建的版本作为起点。为了更好地理解潜在问题，展示了一份近期德语翻译的评估数据。经过深入讨论，对措辞进行了调整，并就建议的新措辞进行投票，目标是每个句子的同意率超过80%。最后，要求患者表明他们对建议内容的同意程度。
十条建议成功翻译成了患者易懂的版本。大多数情况下，原文都有所改动。除了一项建议（第4条建议）外，对于提议的翻译都有广泛的共识。对建议内容的总体同意率很高：8.7（0.6）。
首次由一个大型国际患者群体与风湿病专家合作，成功将EULAR建议转化为患者易懂的语言版本。评估显示达成了广泛共识。将进行不同语言的翻译并在各个国家进一步传播。
