This morning, Arthritis Research UK tweeted a link to a report about some research, which found that “doctors and patients ‘differ on perception of rheumatoid arthritis disease activity’”. The research, done in Austria, looked at RA patients who had started to take methotrexate for their condition and assessed how differently they perceived their disease activity. Analysis found that while patients cited joint pain as the reason for their perceived change in disease activity, rheumatologists focused on joint swelling.
I find this research both interesting and reassuring. While my rheumatologist seems solely concerned with whether or not there is visible swelling and inflammation, I’m more concerned with the fact that I have some kind of joint pain for more than a third of the time. Of course, visible joint swelling is more likely to result in permanent joint damage and obviously, I don’t want that. However, as well as being concerned about my future, I’m also focused on the present and my quality of life. While I’m glad that I don’t often get visible swelling when I’ve got a flare up, the fact is, I’m still in pain, my mobility or dexterity is still affected and often limited and my disease is still active. The fact that I do not (often) get visible swelling (though I do sometimes), was the reason cited by my consultant to postpone trying the methotrexate.
Naturally, both my rheumatologist and I are concerned with stopping the disease from progressing and from causing permanent damage. However, I often have the feeling that this emphasis has meant that the quality of life aspect of NOW is being forgotten. Even though I’ve had this condition for over eight years now, it’s only last year when I actually managed to get a referral to the pain clinic. I would have thought that someone in pain for over a third of the time should get a referral as routine within at least a year of diagnosis. If my GP and rheumatologist had giving joint pain equal weight with joint swelling, perhaps I would have done.
The article on the website quotes the research as saying that “many times there is a discrepancy between patients’ and doctors’ views of disease activity, with doctors providing a better rating than the patients”. This somewhat also reinforces my perception that the lack of physical evidence diminishes the severity of my condition in the eyes of the professionals. Just because my flare-ups don’t come with visible swelling, does not make them any less difficult to deal with, or any less debilitating.
Most of the doctors and consultants have a thorough theoretical understanding of the diseases they deal with. I wonder whether their attitudes and understanding would change if they were actually able to experience flare-ups for themselves. Of course, this isn’t practically possible. In the meantime, I’m welcoming the news that Arthritis Research UK is “funding a study that aims to develop a new tool for measuring disease severity which takes into account the personal impact of the disease and factors that patients – not just those with medics – consider important.”
More about the Arthritis Research UK research can be found here: