Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives
Jones, Bethan; Bennett, Sarah; Larsson, Ingrid; Zangi, Heidi Andersen; Boström, Carina; Van der Elst, Kristien; Fayet, Françoise; Fusama, Mie; Herrero Manso, María Del Carmen; Hoeper, Juliana Rachel; Kukkurainen, Marja Leena; Kwok, Suet Kei; Frãzao-Mateus, Elsa; Minnock, Patricia; Nava, Tiziana; Pavic Nikolic, Milena; Primdahl, Jette; Rawat, Roopa; Schoenfelder, Mareen; Sierakowska, Matylda; Voshaar, Marieke; Wammervold, Edgar; van Tubergen, Astrid; Ndosi, Mwidimi
Peer reviewed, Journal article
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OriginalversjonRMD Open. 2022, 8 (1), 1-10 10.1136/rmdopen-2022-002256
Objectives: To explore patients’ agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). Methods: This 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. Results: The 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. Conclusion: The 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.
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