Patient Materials for Rheumatoid Arthritis Often Miss Crucial Information

Patients with rheumatoid arthritis often receive incomplete of inconsistent information about health outcomes, according to a study published in Seminars in Arthritis and Rheumatism.¹

According to the authors, these major inconsistencies raise concerns about how well-informed patients are when making treatment decisions. They also said these findings support the development of standardized health outcome descriptors (HODs), a tool that could help bridge communication gaps in rheumatology care and improve shared decision-making between patients and providers.

“Given the availability of the HOD framework, and its success in guidelines, we believe that the development of HODs using the current framework would be a useful first step,” the authors wrote. “Additional research into whether this same framework is equally applicable or needs modification in different contexts (eg, guidelines vs other patient-facing material) would also be helpful.”

Varying Outcomes for Rheumatoid Arthritis

The authors conducted a review of 11 patient-decision aids (PtDAs) and 27 patient preference studies to assess how 7 important outcomes of rheumatoid arthritis have been described in English to patients:

• Nonserious adverse events (AEs)
• Serious AEs
• ACR50 response
• Physical impairment
• Joint damage
• Pain
• Remission

Serious and nonserious AEs were each mentioned in 26 of the 38 records, including 18 patient preference studies and 8 PtDAs, but patient-prioritized outcomes were less common. Despite being part of the OMERACT core outcome set for rheumatoid arthritis, pain, joint damage, and physical function were rarely mentioned in patient-facing material.² Only 2 PtDAs and 1 study described remission, and 5 of each described joint damage.¹ Patient preference studies were more likely to mention pain (6 vs 2), physical function impairment (8 vs 3), and ACR50 response (10 vs 5) than PtDAs.

“This may reflect the availability of evidence or perspective of the PtDA or preference study, and does not make the identified record any less valid, but does highlight a gap between which outcomes are presented to patients and those identified as important for decision-making,” the authors said. “Taken together, our study shows that better standardization is needed in terms of how health outcomes for RA are described in patient-facing material.”

Descriptions across all outcomes were heavily weighted toward symptoms, with 94% of materials including at least some information in that category. However, when pain was mentioned, half of the materials failed to describe specific details like what kind of pain, its intensity, or how it might affect daily life. No information was given about how rheumatoid arthritis improvement or physical limitations are tested or treated, and details about how long these outcomes last or what their long-term effects might be were rarely included, as less than 1 in 5 descriptions mentioned them.

Addressing These Gaps With HODs

Shared decision-making depends not only on presenting risks and benefits but on presenting them clearly and consistently to patients. Those managing chronic conditions like rheumatoid arthritis often face complex trade-offs like balancing symptom control against long-term safety or functional outcomes.³ Without a clear and complete picture, they may struggle to evaluate their options in a way that aligns with their preferences and goals. It’s also important to note this study focused on English-language materials, warranting a closer look at how these outcomes are explained to non-English speakers with rheumatoid arthritis.¹

To address these inconsistencies, the authors proposed using structured HODs, a framework that systematically organizes outcome descriptions into 4 domains: symptoms, testing and treatment, time horizon, and consequences. HODs are already gaining traction in clinical guideline development and could help standardize how information is presented in educational materials and decision tools.

However, applying the HOD framework to rheumatoid arthritis presents some challenges. For instance, some developers of decision aids may avoid detailed explanations of testing or treatment to prevent overwhelming users, while others may skip time horizon details when long-term data are limited. Regardless, the current lack of consistency risks leaving patients underinformed, according to the authors, who said future work should focus on aligning HODs and domain definitions and making sure they’re complementary.

“In all of this work, engaging the appropriate stakeholders would be essential, including patients, clinicians, researchers, and health policy makers,” they said. “These are essential principles within OMERACT and have also been stressed within both the PREFER and MDIC initiatives to achieve results that are relevant for clinical, academic and health policy purposes.”

References

1. Raskin N, Hiligsmann M, Rebutoc AR, et al. Standardizing health outcomes for people with rheumatoid arthritis receiving disease modifying drug therapy: a rapid review of patient-decision aids and preference studies to inform the development of OMERACT Health Outcome Descriptors. Semin Arthritis Rheum. Published online June 6, 2025. doi:10.1016/j.semarthrit.2025.152769
2. OMERACT Rheumatoid Arthritis (RA) Core Outcome Set. OMERACT. Accessed June 27, 2025. https://omeract.org/working-groups/rheumatoid-arthritis-core-set/
3. Hazlewood GS, Schieir O, Bykerk V, et al. Frequency of symptomatic adverse events in rheumatoid arthritis: an exploratory online survey. J Rheumatol. 2022;49(9):998-1005. doi:10.3899/jrheum.210688