Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients’ perspectives

Abstract

ObjectivesTo explore patients’ agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA).MethodsThis mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants’ demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories.ResultsThe sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9–10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE.ConclusionThe EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients’ preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

Perspective chapter: NURSE-LED EDUCATION FOR PATIENTS WITH CHRONIC INFLAMMATORY ARTHRITIS

“…Patient education, as defined in the recommendations, can facilitate patients to make informed choices in order to manage their disease [57].…”

Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study

“…Expanding on the importance of self-management, addressing the various needs of individuals with RA—such as information, emotions, social support and practical guidance—is crucial 24 25. Prior research and guidelines have emphasised the value of education and counselling to empower patients and enhance emotional well-being while providing guidance on managing symptoms such as pain, fatigue, depression, anxiety and sleep issues 9–12 23 26.…”

Assessing acceptability and identifying barriers and facilitators to implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with rheumatology professionals in 23 European and Asian countries

“…Therefore, all these groups are the target of the dissemination and implementation 4. We have disseminated these recommendations to patients with IA in Europe and overall, their agreement levels were very high, suggesting that they reflect patients’ preferences for engaging in collaborative care 22…”