I am R-factor negative and, not only that, all my labs associated with inflammation are always stone-cold normal. This is really frustrating when you go in to your rheumatologist’s office in pain with visibly swollen joints and your labs indicate there’s nothing out of the ordinary. My rheumatologist told me during one of these visits (and this is one of the reasons I love her) that this simply means there’s not a test yet available that can detect what’s going on with me. Normal labs don’t necessarily mean that everything truly is normal. This is incredibly important because I have read stories where some doctors have insisted their patients were in remission just because their labs that day were in the normal range.
To me, there are few things as frustrating as being told that nothing is wrong when I know that I feel awful.
RA tests vs. how the person living with RA feels
A recent study reported in RheumatologyNetwork.com and originally published in Arthritis Care and Research concludes that how a patient feels may be a better indicator of how a treatment is working than actual disease activity. This was true for both RA and psoriatic arthritis patients.
This patient self-assessment in the study is known as Patient Acceptable Symptom State or PASS. It covers the five domains of pain, functional capacity, fatigue, sleep disorders and coping. A definition from the National Institute of Health defines PASS as, “…the highest level of symptom beyond which patients consider themselves well.” PASS basically asks the question, “If you were to remain for the next few months as you were during the last week, would this be acceptable or unacceptable to you?” PASS essentially wants the patient’s opinion if the treatment plan is working based on the five domains.
The study consisted of almost 1000 patients, about half of which had RA and the other half psoriatic arthritis. One of the really interesting results of the study to me was that it suggests the impact of the disease is more than just how severe the symptoms are. The impact also includes the patient’s quality of life (or perceived quality of life), and this should/could be a clinically relevant treatment objective. Gosh, is it just me, but doesn’t this seem to be pretty obvious? Shouldn’t treatment plans address what we feel our main issues are?
Note that PASS does not ask the patient about disease progression, which is still measured by joint assessment, radiographic studies, and other clinical tools including those labs that I hate. The study correctly points out that both RA and psoriatic arthritis are chronic, progressive diseases. The goal must not only be to improve the patient’s quality of life but to also halt the disease. So even if the patient feels they are doing well, if an X-ray shows continued joint damage, then the treatment plan should be amended.
Listen to those living with RA
There have been a lot of great advances in medicine in the last few decades, including exciting developments in the treatment of RA. To me, one of the best changes is that patient voices are being heard. I think part of this is that there is so much quality information available at the patient level and that this empowers us to be a more proactive partner in our health care. Studies such as the one on PASS provide the added clinical evidence that our voices are valid. And while we, the patients know this stuff, sometimes our doctors need to be convinced.