, according to several experts who are championing the need for the earlier diagnosis of the condition.
AxSpA is an inflammatory condition of the spine and joints that often goes undiagnosed for many years. Worldwide, the average time to diagnosis was found to be up to 6 years in a recent systematic review. But patient advocacy groups in both the United Kingdom and United States say that the delay can be much longer, possibly up to 10 years or more.
Being aware is key
“We know people get significant pain and functional difficulties if it’s not picked up early, and that impacts on patients financially,” said Toby Wallace, MBChB, a general practitioner based at the Derwent Practice in Malton, North Yorkshire, England, and one of 12 Champions in Primary Care for the National Axial Spondyloarthritis Society in the United Kingdom.
Being aware of the condition is vital to improving the time to patients getting diagnosed and treated, Dr. Wallace said in an interview. The quicker patients can be identified and referred onward on to a specialist rheumatology colleague means the sooner they will receive the appropriate care.
Chronic back pain
One of the key symptoms of axSpA is back pain, said Dr. Wallace. Back pain is an “extremely common” symptom seen in primary care – an estimated 60% or more of adults will have a back problem in their lifetime – but with axSpA, “it’s more about it being a persistent pain that is not going away.”
Fellow NASS Primary Care Champion and advanced practice physiotherapist Sam Bhide, MSc, calls them the “frequent flyers.”
As a first-contact practitioner, much of her practice consists of seeing people presenting with back pain, many of whom may have already been seen by other professionals but diagnosed with mechanical back pain.
“These patients return due to lack of improvement in their ongoing back pain symptoms,” Ms. Bhide noted. But how do you know if it is axSpA causing the pain?
“Normally, we would look for people who have had back pain for more than 3 months, or that gradually progresses on and off over weeks, months, or years, and their symptoms ease but do not resolve completely,” she said.
Eased by exercise and medication
“Essentially we are looking for people with inflammatory back pain,” Ms. Bhide explains.
The pain is often eased with anti-inflammatory medication and with exercise, “which is why these people get missed because they are managing their symptoms with exercises and their anti-inflammatories,” she said.
Sleep disturbance and morning stiffness
Sleep disturbance and feeling stiff in the spine for at least 30 minutes upon waking in the morning are other big indicators that chronic back pain may be due to axSpA, Dr. Wallace said.
“Waking in the early hours of the morning with pain or stiffness and having to get up and move around is fairly usual.”