There are a few reasons for this. The way we understand axSpA has changed dramatically over the past few decades. We used to think it was a rare disease, and it was believed to primarily affect men. Now we know that it’s relatively common and that women are just as likely to have this condition as men.

Second, axSpA is difficult to diagnose. There is no specific blood test that can diagnose this condition. AxSpA primarily causes inflammation in the spine and sacroiliac joints – two locations that are nearly impossible to examine for inflammation. Even if a doctor orders an X-ray of the sacroiliac joints, they may not see anything abnormal because, on average, it takes eight years for an X-ray to show abnormalities.

Finally, the symptoms of this condition are nonspecific. Back pain, the main symptom of axSpA, is very common in the general population, and only 5% of patients with back pain have axSpA. Symptoms also include tendinitis, eye inflammation (uveitis), psoriasis, inflammatory bowel disease, or a family history of similar conditions. It can be challenging because most people will see different specialists for each condition. It is hard for one person to really put this all together.

Rheumatologists have the training and skill set to take a very thorough history and connect the dots among these seemingly unrelated symptoms.

Nearly one in five U.S. adults has chronic back pain, and the pain can be attributed to many different conditions, many of which are not related to rheumatological conditions.

The challenge is, how should we decide which back pain patients should be referred to a rheumatologist?

Our goal was to create feasible, simple, and practical recommendations that primary care providers and other clinicians could use in their daily practice to help determine whether a particular patient should be referred to rheumatology. These recommendations were developed on behalf of the Spondyloarthritis Research and Treatment Network (SPARTAN).

To achieve this, we convened a large group of experts, including rheumatologists, ophthalmologists, gastroenterologists, patients, and other specialists taking care of back pain conditions, to compile a comprehensive list of characteristics associated with axSpA. Looking at past studies, we selected the ten items that we agreed were most relevant and then weighted each item to develop a simple scoring system. The scoring system was designed so that, on average, rheumatologists will diagnose one patient with axSpA for every three individuals referred to them for screening for the condition.

The field recently updated our guidance around diagnosing people with axSpA. We used to require evidence of damage on the X-ray, but our new understanding allows us to diagnose people in their first two or three years with the help of MRI, before they have visible damage. This means we have a much bigger window to treat people and slow disease progression.

We also now have a wide range of medications available to treat the condition. Until about fifteen years ago, we could diagnose patients but had very limited therapies to offer them. Now, we have 10 different medications, giving us a lot of options to help people feel better. Newer therapies not only improve the symptoms and inflammation but may also prevent fusion of the spine.

Going forward, we hope these recommendations can be validated in a prospective study. We want to understand whether this guidance actually changes diagnosis rates across the population. I also hope that health systems begin to embed these recommendations in their electronic health record systems in the form of an online calculator.

In addition, we developed a free, online patient screening tool that individuals can use to determine if they should see a rheumatologist for their chronic back pain.

Through this work, I am hopeful that we can provide more patients with an accurate diagnosis and appropriate treatment to make a meaningful difference in their lives.