About
The Remission in RA Patient Perspective Working Group was established in response to concerns that traditional remission criteria, such as the ACR/EULAR definition, may not fully capture what remission means to patients themselves. While these definitions include patient global assessment, early work by this group revealed that important aspects of the patient experience were missing.
What We've Done:
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Conducted interviews with 47 people across three European countries to explore what “remission” means to them.
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Identified key domains through surveys of over 270 individuals with RA. The top three patient-prioritized domains were:
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Pain
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Fatigue
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Independence
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While existing measures for pain and fatigue were adequate, measuring independence proved more complex. Initial efforts to quantify independence using a single numerical rating scale fell short.
Our Current Focus:
The group is now dedicated to better understanding and measuring independence in the context of RA remission. Through:
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A scoping review of 50+ studies,
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In-depth interviews with individuals across three continents, and
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Patient feedback on draft instruments,
We’ve uncovered that independence is multi-dimensional, encompassing:
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Being physically and functionally able
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Participation beyond function
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Cognitive independence
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Autonomy (having control over life, work and needs)
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Assistance (be it person-to-person or aids)
A draft definition of independence received strong support from stakeholders (94% agreement), and work is ongoing to refine this definition further.
Current Stage in the OMERACT Process
The group is defining and measuring “independence” as a key aspect of patient-defined remission. They are identifying suitable instruments and developing a composite measure to capture this new concept.
Latest Update
OMERACT 2025 Conference Highlights
Fellow Poster: Our OMERACT Fellow, Gulsum Gazel, presented a poster summarizing the current state of our work, sparking excellent conversations about next steps and collaborations.
👉 View the poster here
Lightning Talk: In a rapid-fire session, our team shared an upcoming teaser of the Special Interest Group (SIG) session taking place during the conference.
👉 Watch the lightning talk here
Closing Plenary Talk: We were also featured in the Closing Plenary, where we highlighted the activities of the (SIG).
👉 Watch the presentation here
Looking Ahead
We are preparing to submit the results of our scoping review for publication. At the same time, the group is finalizing definitions of the individual components of our endorsed remission definition. We are also discussing potential gaps where new instruments may be required—for example, to assess cognitive independence—ensuring that patient perspectives remain central to outcome measurement.
Meet the Team
Caroline Flurey, UK
Chair
Susanna Proudman, Australia
Chair
Peter Tugwell, Canada
Chair
Ummugulsum Gazel, Canada
Emerging Leader
Deb Constien, USA
Patient Research Partner
Wijnanda Hoogland, Netherlands
Patient Research Partner
Recent Publications
- Flurey, Caroline A., et al. “‘It Means Almost Forgetting That You’ve Got a Disease’: An OMERACT Study to Define Independence in the Context of Rheumatoid Arthritis Remission from the Patient Perspective.” Seminars in Arthritis and Rheumatism, vol. 68, 152526, 2024, https://doi.org/10.1016/j.semarthrit.2024.152526.
- Rasch, L., et al. “Patient Perspective on Remission in Rheumatoid Arthritis: Validation of Patient Reported Outcome Instruments to Measure Absence of Disease Activity.” Seminars in Arthritis and Rheumatism, vol. 51, no. 6, 2021, pp. 1360–69, https://doi.org/10.1016/j.semarthrit.2021.07.005.
- Khoo, Thomas, et al. “Defining Independence: A Scoping Review by the OMERACT Patient Perspective of Remission in Rheumatoid Arthritis Group.” Seminars in Arthritis and Rheumatism, vol. 58, 152152, 2023, https://doi.org/10.1016/j.semarthrit.2022.152152.
- Jones, Bethan, et al. “Considerations and Priorities for Incorporating the Patient Perspective on Remission in Rheumatoid Arthritis: An OMERACT 2020 Special Interest Group Report.” Seminars in Arthritis and Rheumatism, vol. 51, no. 5, 2021, pp. 1108–12, https://doi.org/10.1016/j.semarthrit.2021.07.010.
- Rasch, Linda A., et al. “Validating Rheumatoid Arthritis Remission Using the Patients’ Perspective: Results from a Special Interest Group at OMERACT 2016.” Journal of Rheumatology, vol. 44, no. 12, 2017, pp. 1889–93, https://doi.org/10.3899/jrheum.161111.