Abstract

Background Improving knowledge and skills is recommended for patients with rheumatoid arthritis (RA) to enhance self-management. Measuring knowledge is also part of the educative approach. However, the available Knowledge questionnaires (KQs) (ref 1,2) needed to be updated according to recent recommendations for RA management and the patients’ needs (ref 3). Objectives To develop and a validate a new KQ in RA. Methods 4 steps. Step1. Selection of knowledge considered essential for patients with RA through Delphi rounds by a working group of rheumatologists, health professionals (HPs) and patients leading to a list of consensual items (ref3). Step2. Two rheumatologists and a rheumatology nurse constructed the first version of the KQ, each question of the KQ referring to a selected item on the list. The formulation was then amended by the working group. A new version was elaborated during a face-to-face meeting of 3 HPs and one patient. Step 3. The KQ was submitted to ten patients for cognitive debriefing, comments were analysed and a the final version was elabored. Step 4. Multicentric validation in 11 rheumatology departments: acceptability was measured by the rates of missing data per item, reproducibility and sensitivity to change were assessed respectively by test/retest at a 2 weeks interval (Lin’s concordance correlation coefficient) and by testing the KQ before and after patient education sessions. The sample size estimation and statistical analyses were conducted according to COSMIN recommendations, especially concerning thresholds of metrological indexes. Results Step1 obtained 45 knowledge items, 32 considered essential and 13 considered useful, selected respectively by more than 2/3 and more than 50% of participants to the Delphi rounds, leading to the RAKE: a 45-items questionnaire, with a 32-items short form. The RAKE contains 6 knowledge domains: disease knowledge (10 items), pharmacological treatment (14), non -pharmacological treatment (7), comorbidities (1), self-care for pain and fatigue (5), adaptative skills to psychosocial and professional issues and health care system (8). The validation included 130 patients, 108 (83%) women, mean age 56.4±12.10 years, median disease duration 9 years [4; 23]. The missing data rate per item was 1.1 [0.7; 1.6]. The RAKE’s external validity was confirmed by correlation with the RAID score of 0.16 (p=0.08). Conclusion This study enabled the development and the validation of the RAKE, a Knowledge questionnaire for patients with RA, with a good acceptability, reproducibility and sensitivity to change. This KQ will be helpful to assess the process of knowledge acquisition in patient education approaches.

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