Introduction
According to international guidelines [
1‐
3], treatment decisions in rheumatoid arthritis (RA) should be made by physicians and patients through a shared decision-making process taking into account the patient’s values, preferences, and comorbidities. Patient education aims to enable patients and their family members to acquire the skills they need to manage life with their condition [
4]. The European Alliance of Associations for Rheumatology (EULAR) advocates patient education as an integral part of standard care for people with inflammatory arthritis [
5], to allow them to develop self-care and coping skills [
5‐
7]. Patient education includes a wide range of activities based on a planned interactive process through face-to-face or group sessions or online offerings [
5] that accommodate patient’s needs and values [
8,
9].
Although patient education is not limited to knowledge, assessing patient knowledge is part of the educational process and may be carried out by means of questionnaires.
Several knowledge questionnaires (KQs) are available in the literature. The Patient Knowledge Questionnaire, which was developed in 1991 and validated again in 2004 [
10,
11] and the Knowledge Questionnaire, which dates from 1997 [
12], have both been used in several studies [
14‐
17]. However, they were constructed before the era of targeted disease-modifying anti-rheumatic drugs (DMARDs). Their content, mostly focused on knowledge of disease, is not (at this time) in keeping with recent recommendations for RA management and patient needs [
1‐
3,
13], particularly in terms of pharmacological treatment and strategy to remission, pain management and coping skills [
13], comorbidities [
18] and DMARD safety [
19]. More recently, a 13-item questionnaire called, the rheumatoid arthritis knowledge assessment scale (RAKAS) was developed in Pakistan, but it has not been widely assessed or validated [
20]. Other questionnaires specifically consider knowledge of pharmaceutical treatments such as methotrexate [
21,
22] and biological DMARDs (bDMARDs) [
23] but do not allow an overall assessment of patient knowledge.
To address this gap, the aim of this work was to construct and validate a generic KQ for RA patients for use in routine care and research.
Discussion
This study describes the development and validation of RAKE, a knowledge questionnaire for RA patients. The RAKE showed good acceptability with a low rate of missing responses, good internal and external consistency, adequate test–retest reproducibility, and good sensitivity to change assessed before and following patient education sessions.
The questionnaire was constructed with involvement and input from both healthcare professionals and patients at each stage in the process. A preliminary study had identified knowledge considered essential or useful for the patients, either from the patients’ perspective or in terms of recommendations put into practice by caregivers [
13].
The RAKE addresses patients’ needs for knowledge in the era of targeted drugs providing safety messages on pharmacological treatments and particularly bDMARDs [
19]. Furthermore, the RAKE has incorporated treatment strategies such as early management, the goal of remission, and shared decision making with the doctors in accordance with international guidelines [
1‐
3].
This study also showed a lack of basic knowledge on widely used medications such as NSAIDs and analgesics, which raises questions over how HPs convey information in practice: despite the information available online [
37,
38], patient awareness of side effects remains insufficient [
39]. Previous questionnaires were not geared to improving this knowledge as they did not mention cardiovascular side effects or digestive bleeding. The RAKE could, therefore, help to detect gaps in this area, typically to improving monitoring for blood pressure when taking NSAIDs [
40].
The study also found that patients are underinformed on the increased risk of cardiovascular disease in RA, despite it being a major comorbidity [
41,
42]. In terms of disease knowledge, the RAKE has placed emphasis on practical messages such as the role of tobacco consumption in the onset of RA, which is another factor that many RA patients were unfamiliar with and that has implications for management of the disease [
43].
Regarding non-pharmacological treatments, the RAKE has given focus to physical activity rather than just joint protection, which brings it into line with the latest recommendations [
44]. The RAKE also contains information and advice on the proper type of exercise and how to manage exercise-related pain and fatigue, and on other self-care issues. These knowledge items scored relatively poorly in this study but were improved following patient education. Many patients did not know that exclusion diet is not recommended in RA, despite it being currently studied [
45].
Other domains addressed in the questionnaire include adaptive skills, which had the highest rate of correct responses, notably on patient pathway, multidisciplinary management of RA, and personal or professional matters [
46]. This domain is an originality of the RAKE that emerged through participatory input from patients and HPs. The formulation of the questions on these topics proved to be challenge and their statements often seemed banal and their answers intuitive. However, the designers chose to retain these elements, based on the rationale that a knowledge questionnaire is not merely an assessment tool but also an educational tool that facilitates communication between patients and HPs as part of the educational process [
4].
Among the factors associated with better knowledge, we identified a younger age and longer disease duration. Recourse to patient associations, brochures and booklets, or therapeutic education sessions was associated with a higher score, as shown in other studies [
19]. RAKE score was weakly correlated to beliefs about medication or self-efficacy, which was to be expected as these concepts share complex determinants.
Strengths of this study include the multicentric validation process, notably through recruitment by a patient association and private practice centers, the substantial involvement of patients, the psychometric validation in line with current guidelines, and the simultaneous validation of a short-form RAKE which would be easier to use in current practice. Another strength of this study is that it detects unmet educational needs on important issues such as symptomatic treatments, comorbidities and tobacco consumption. Conversely, the high score on bDMARDs may be due to a recruitment bias by rheumatology departments in the validation stage, where education on safety competencies regarding targeted DMARDs is already part of current practice.
Limitations of this study include a potential cultural bias, since development of the questionnaire resulted from Delphi rounds that were only conducted in France. Moreover, as mentioned above, the extension of the concept of knowledge from cognitive knowledge to a broader range of practical and coping skills [
4], although closer to the patients’ perspective, has made it difficult to elaborate discriminative questions. Another limitation is that the RAKE scores were highly correlated with education level, making it less suitable for people with low literacy, which is another limitation. Additional educational strategies for knowledge assessment will be needed for these patients [
47]. Finally, one limitation was inherent to the concept of knowledge scale, as management strategies change over time and can make a knowledge questionnaire obsolete within a few years. This is why the RAKE questionnaire should be used as a starting point for patient education and the health professionals are invited, to provide updated information as necessary.
The RAKE questionnaire may be useful in several contexts. It can be valuable for detecting patient needs for education to help manage their disease and their treatment before or during face-to-face or patient-group sessions, and as a way to initiate HP–patient communication. The RAKE may usefully serve to improve the information delivered by HPs and the content covered in education sessions by evaluating the knowledge level of a population of RA patients. It can help to motivate patients to participate in educational programs by helping them understand certain misconceptions or misbeliefs. The RAKE may also help to beneficially assess the efficacy of education interventions in routine practice or in clinical trials.
In conclusion, the RAKE is an updated questionnaire designed to assess patient knowledge in RA. It has good psychometric proprieties and satisfactory reproducibility and sensitivity to change after patient education. Further studies are now needed in other cultural contexts and to explore the factors currently associated with RA knowledge in RA patients.
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.