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:

• Conducted interviews with 47 people across three European countries to explore what “remission” means to them.
• Identified key domains through surveys of over 270 individuals with RA. The top three patient-prioritized domains were:
  • Pain
  • Fatigue
  • Independence

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:

• A scoping review of 50+ studies,
• In-depth interviews with individuals across three continents, and
• Patient feedback on draft instruments,

We’ve uncovered that independence is multi-dimensional, encompassing:

• 1. Being physically and functionally able
• 2. Participation beyond function
• 3. Cognitive independence
• 4. Autonomy (having control over life, work and needs)
• 5. 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.

What’s Next:

The group is now:

• Conducting a second scoping review to identify existing instruments that measure independence or its components in musculoskeletal diseases.
• Preparing to develop a composite measure for independence in RA remission.
• Inviting input from the community to ensure the measure reflects what matters most to patients.

Join us in shaping the future of RA remission outcomes—where patient priorities lead the way.