Abstract
Objectives To co-develop and evaluate a flare action plan for people living with rheumatoid arthritis (RA).
Methods As part of a patient-initiated follow-up model (called Appointments by Choice or ABC),[1] a multi-method, phased approach was utilized to co-develop and evaluate the flare action plan (Figure 1). Following an environmental scan of patient-facing materials for RA flare self-management,[2] the action plan was iteratively co-developed with the research team (including rheumatologist, physiotherapy, and knowledge mobilization expertise), a design team, and patient partners. The evaluation phase was completed post-ABC implementation to ascertain the real-world value of the action plan. This evaluation included Patient Education Materials Assessment Tool (PEMAT)[3] ratings completed by patient partners (n=4) to capture the understandability and actionability of the action plan, and qualitative interviews with ABC patients (n=15). PEMAT scores were analyzed with descriptive statistics and interviews were analyzed using thematic analysis.
Results The iterative co-development phase included multiple steps: (1) content development with research team expertise, (2) incorporation of patient partner feedback, (3) visual design with a design team, and (4) research team and patient partner feedback on both content and design. During evaluation, averaged patient partner PEMAT scores were 88.3% for understandability and 90% for actionability. Among the 15 participants who were interviewed, the median age was 61 years (IQR = 9) and participants had lived with RA for a median of 11.5 years (IQR = 4.8). 60% identified as female, and 60% identified as White/European. Three key themes emerged from interview data. (1) “This isn’t new… but it’s good to read it again” - participants described how the flare management strategies presented in the action plan were a good reminder for those who have been living with RA for many years, and a valuable resource for newly diagnosed individuals. (2) “It’s inviting” - participants had positive reactions to the design and visual aspects of the action plan, describing clear organization and layout, and inviting colors and visuals. (3) “It’ll be in my corner” - participants described how the action plan could be valuable for future reference.
Conclusion The flare action plan was developed for people with RA to support evidence-based self-management. It has demonstrated value for patients on the ABC pathway, as shown by PEMAT ratings and qualitative data, and could be targeted toward newly diagnosed individuals. Furthermore, this patient-facing material could be disseminated more broadly across Canada and adapted for other chronic conditions.
References [1.] Ester M. BMC Rheumatol 2025;9:31. [2.] Subdar S. J Rheumatol 2024;51:577-86. [3.] Shoemaker SJ. Patient Educ Couns 2024;96:395-403. Supported by a CIORA grant
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