Schuster Louis, Henes Jörg, Diener Matthias, Mühlensiepen Felix, Andreica Ioana, Hueber Axel, Schett Georg, Knitza Johannes
Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU) Erlangen-Nürnberg, Erlangen-Nürnberg, Deutschland.
Medizinische Klinik 3 - Rheumatologie und Immunologie, Universitätsklinikum Erlangen, Ulmenweg 18, 91054, Erlangen, Deutschland.
Z Rheumatol. 2025 Jun;84(5):404-409. doi: 10.1007/s00393-024-01584-x. Epub 2024 Nov 13.
Patient education is an integral component of the treatment of axial spondyloarthritis (axSpA). However, the validated tools currently available for assessing disease-related knowledge are outdated and, in the case of axSpA, only available in English. The aims of this work were therefore (1) to develop a German-language tool for assessing disease-specific knowledge among axSpA patients and (2) to assess this tool in a pilot study.
Available axSpA-specific tools were assessed by a panel of experts and a draft of the current G‑ASKQ7 questionnaire was agreed upon. After evaluation of face validity and subsequent adaptation, consecutive adult axSpA patients of a university hospital (Universitätsklinikum Erlangen) outpatient rheumatology department were asked to complete the questionnaire. Correlation between the patients' overall scores and other collected parameters (age, sex, and disease duration) were investigated.
Patients rated the developed G‑ASKQ7 questionnaire comprising seven questions as easy to understand and completed it within an average of 6.3 ± 2.0 min. The final questionnaire was completed by 65 axSpA patients (36 women; mean age 45.3 ± 12.4 years; mean disease duration 8.6 ± 7.3 years). The average G‑AKSQ7 score was 17.8/25, with significantly higher scores among women (19.0/25) than men (16.3/25; p ≤ 0.05). The question most often answered correctly (79.3 %) was question 7 concerning disease self-management, whereas question 4 on measurement of disease activity received the most incorrect answers (55.8 %). No significant correlation between disease duration (p = 0.57; Pearson's correlation coefficient, r = 0.07) or age (p = 0.67; r = -0.05) and disease-specific knowledge was found.
The G‑ASKQ7 represents the first German-language instrument for measuring disease-specific knowledge among axSpA patients. Routine application of this questionnaire would enable low-threshold assessment of an individual patient's knowledge requirements and thus provision of appropriate educational information. Continuous updates and further evaluation studies are required.
患者教育是轴性脊柱关节炎(axSpA)治疗的一个重要组成部分。然而,目前可用于评估疾病相关知识的经过验证的工具已经过时,而且对于axSpA来说,这些工具仅以英文提供。因此,这项工作的目的是:(1)开发一种德语工具,用于评估axSpA患者的疾病特异性知识;(2)在一项试点研究中对该工具进行评估。
由一组专家对现有的axSpA特异性工具进行评估,并就当前的G‑ASKQ7问卷草案达成一致。在评估表面效度并随后进行调整后,要求埃尔朗根大学医院门诊风湿病科的成年axSpA患者连续完成该问卷。研究了患者的总体得分与其他收集参数(年龄、性别和病程)之间的相关性。
患者认为所开发的包含7个问题的G‑ASKQ7问卷易于理解,平均在6.3±2.0分钟内完成。最终问卷由65名axSpA患者完成(36名女性;平均年龄45.3±12.4岁;平均病程8.6±7.3年)。G‑AKSQ7的平均得分为17.8/25,女性得分(19.0/25)显著高于男性(16.3/25;p≤0.05)。回答正确率最高的问题(79.3%)是关于疾病自我管理的问题7,而关于疾病活动度测量的问题4回答错误最多(55.8%)。未发现病程(p=0.57;Pearson相关系数,r=0.07)或年龄(p=0.67;r=-0.05)与疾病特异性知识之间存在显著相关性。
G‑ASKQ7是首个用于测量axSpA患者疾病特异性知识的德语工具。常规应用该问卷将能够对个体患者的知识需求进行低门槛评估,从而提供适当的教育信息。需要持续更新和进一步的评估研究。