Do You and Your Doctor Agree on the Severity of Your RA?
We’d like to think that medicine is cut and dry and always based upon objective science. We get a blood test, take a drug, and get better. But most diseases and conditions don’t resemble this model. Complex autoimmune diseases like rheumatoid arthritis entail processes that involve numerous variables and some levels of subjectivity. Diagnostic measures for RA include counts of swollen and painful joints and various blood tests. These measures have some level of accuracy but blood tests like rheumatoid factor and general levels of inflammation don’t always show positive in patients with RA symptoms. Disease aspects like pain, morning stiffness, and fatigue involve subjective perceptions. Attaining agreement between patients, measurement tools, and doctors can be critical to diagnosing and treating the disease.
The various tools for gauging RA disease activity
Over the years, numerous measurement tools have been developed to help doctors determine extent of RA disease activity. These measures include the HAQ, DAS 28, CDAI, ACR 20, and RAPID 3, among others.1,2 These survey-type tools usually focus on joint activity, swelling, pain levels, disability. Some, like the DAS 28 include blood tests in the assessment (28 refers to 28 joints – the number of RA affected joints). Your rheumatologist may have used one or more of these tools for initial diagnosis and to monitor treatment effectiveness over time. These tools are also used for drug development and testing. Unlike objective physical measurements like weight or height, these tools involve some level of subjectively based on perceptions of the patient, doctor, or both. In a recent study, researchers demonstrated that doctors and patients sometimes agree, and sometimes disagree on some of these measures.3 Occasionally doctors and patients completely disagree.4 One group of researchers noted that patients tend to focus on pain while doctors focus on blood tests.5
How much do doctors and patients agree over RA symptoms?
Last autumn I attended the 2013 American College of Rheumatology (ACR) annual conference. At one research session, a group of Canadian researchers presented a paper titled “Can People With Rheumatoid Arthritis Self Monitor Their Disease Activity?”6 Their goal was to compare doctor and patient assessment of disease activity. While the authors stated that moderate agreement between rheumatologists and patients was found, it does not address the fact that after adjusting for chance agreement, there remained between 25% to 49% disagreement depending on what measurement tool was used. This result indicates that patients and doctors don’t always see eye to eye.
It is certainly the case that patients may overstate their symptoms. It is also the case that doctors may understate or outright dismiss symptoms. But the bottom line is that the patient is the one who lives with the disease on a daily basis and they know their bodies better than anyone. Open communication and compassion on the part of a doctor can go a long ways to helping develop treatment plans and monitor disease activity. I’m fortunate to have a very caring and understanding rheumatologist. At every visit, the first thing my doctor does is to ask me how I’m feeling and to carefully listen. This conversation always leads to a discussion about treatment effectiveness and needed modifications.
More work is needed in order to bring RA patients and rheumatologists closer into agreement about disease activity. Fortunately, a researcher received funding and is conducting a study on including patients’ views of the disease in diagnosis and treatment plans.7 Better and more accurate measurement tools and blood tests are needed. Positive patient-doctor relationships need to be fostered. As a patient, you have a right to be heard and speak into the diagnosis and treatment process.
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