How do patients gauge how they're doing? As it turns out, not quite the same as how physicians assess disease activity.
We do composite scores which include physical findings of swollen and tender joints, laboratory tests of inflammation, and we throw in a token patient's global assessment for patient participation sake (after all, it is their disease). Scores like DAS28/DAS44, SDAI & CDAI have been validated to reflect disease activity and eventual joint damage.
Patients seem inordinately concerned with the following, especially when their disease is worse:
2) morning stiffness
4) physical function.
Some of these subjective concerns have been semi-quantified and validated, such as HAQ for function, and SF36 for quality of life. Others constitute part of the various disease activity scores, or as a composite patient reported outcome (PRO) like the RAPID3 (pain, function, patient global).
So, the physician's tools for assessing disease activity appear more objective, while those of the patient's seem definitely subjective. Quite discordant, no? So who's better? Whose assessment is more precise, whose outcome is a more accurate reflection of true remission? Obviously, the measure/outcome that better achieves our ultimate target/goal. This then begs the question, do we share the same target/goal of remission?