You’re absolutely right. Damage was initially included as ‘joint deformity’ and ‘progression’. In the rounds of voting, ‘progression’ was left out, and ‘joint deformity’ was in. After the winning and binning of domains (because we had way too many for a core set), the patients included ‘joint deformity’ under ‘joint involvement’. Unfortunately, we were told not to mix damage with symptoms and ‘joint involvement’ became composed of ‘swelling’, ‘tenderness’, and ‘stiffness’. Therefore, you’re right, damage has been left out. We could discuss whether trying to align and reach consensus, we got rid of a very relevant domain. What do you, and others, suggest?

Independence was strongly supported by both patients and researchers, despite a ‘provisional’ definition. The group was very happy with the definition; however, we were informed by the WG on remission from the patient perspective that they were working on an additional definition. Having it in the outer circle would have been an idea, but we were told that the definition was almost there. We think that the inner layer is the place for this relevant long-term domain.

Thank you!!

Damage is an important outcome in longitudinal studies. But it is often not prioritized by patients. The issues brought up by the discussion of damage are a result of incomplete clarity on what this proposed core set really is. See my next comments.