The Delayed Diagnosis of Spondyloarthritis Save

You see them from the corner of your eye, standing with a kyphosis in the waiting room. They are filling out their paperwork, standing up because sitting is just not pleasant. You are the rheumatologist with an  interest in ankylosing spondylitis (AS) and spondyloarthritis, so more likely than not, the patient with the bent spine is going to be your next new patient. In the back of your mind you are hoping that they are not so far along so that the therapy you may prescribe can make a difference in their life.

The history from this 40 year old man is only too familiar.  He started having persistent back pain during college.  He thought it was from the intramural sports he was playing. He would take over-the-counter nonsteroidal drugs with some relief on occasion, but not on a consistent basis.  

He has lived in a more rural area where the chiropractor was the most accessible health professional who dealt with back pain problems. He has been going to the chiropractor for adjustments on a monthly basis without making much progress. He remained stiff in the morning taking about 2 hours to be mobile. He has pain at night and may be awakened out of a deep sleep because of back pain. At those times, he would get out of bed and walk around to relieve his discomfort.  

At times, his afternoon fatigue would be overwhelming, almost to the point of needing a nap. His chiropractor took a recent radiograph of his lower spine. He was told that there were changes in his pelvis and lower spine but that these changes could be improved with regular manipulations of the spine, spaced over a number of months.

He decided that he was not getting any better and needed to find out more information about chronic low back pain. He decided to go on the internet, only to find out more information about his back pain problem. As luck would have it, he found THESPINECOMMUNITY.COM website that offered information about all forms of back pain. He decided to make an appointment with the Executive Editor of the website.

His physical examination demonstrated the classic findings of ankylosing spondylitis.  His Schober’s test was 1 cm, his chest expansion 4 cm, and his head to wall distance 4 cm.  He had limited rotation of the entire spine.  His peripheral joints had normal motion.  The remainder of his examination was unremarkable.

He brought in his underexposed radiograph of the pelvis and lower spine taken by the chiropractor.  The radiograph revealed bilateral fused sacroiliac joints with early syndesmophytes affecting the L5-S1 interspace.

The story of the delayed diagnosis of spondyloarthritis in this kyphotic man is all too common.  It may be even more delayed in women with spondyloarthritis where the symptoms are more subtle. 

The delay between symptom onset and diagnosis of spondyloarthritis has been estimated to be between 8 to 11 years in Europe and approximately 13 years in the USA when looking at data from a decade ago ^1,2,  A more recent report from claims data by Atul Deodhar suggests that the delay in a rheumatology referral of a spondyloarthritis patient may be about 10 months³.  In the remainder who see non-rheumatologists and no referral, a correct diagnosis is made in only a minority of the time, about 40%. 

In Deodhar’s study of 87 million aged 18 to 64, about 16.8% or 15 million had back pain during the decade from 2001 to 2011.  From this group, 4,245 had a diagnosis of spondyloarthritis.  Of this group, 2,092 were not referred to rheumatologists while 1,244 were referred (37%). 

Non-referred patients were most frequently diagnosed by primary care physicians (25.7%), chiropractors/physical therapists (7%), orthopedic surgeons (3.8%), pain clinic physicians (3.6%), ER physicians (3.4%), and others (19.2%).  Of 347 patients initially diagnosed by a non-rheumatologist but had a rheumatologist visit subsequently, 58.2% had a non-spondyloarthritis diagnosis of their back pain. While the median delay from back pain diagnosis to rheumatologist referral was about 10 months. Dr. Deodhar’s study could not report on the duration of back prior to the referral.

Multiple questions concerning the delay in referral and inappropriate diagnosis by non-rheumatologists, has lead TheSpineCommunity.com to initiate a research survey involving individuals with Ankylosing Spondylitis in order to better understand their access to care and their diagnostic journey.

The purpose of the research survey is multifold.  First is to evaluate and better understand the early symptoms of individuals ultimately diagnosed with AS; Second to catalogue how those symptoms influenced their access to health care system; Third to enumerate the medical advice and treatment options they were presented with prior to receiving their definitive AS diagnosis.   

The under diagnosis and delays in receiving appropriate medical care have important consequences to individuals impacted by this condition that could be prevented with earlier diagnosis and appropriate treatment. The reasons contributing to the delay and under diagnosis are multifactorial and have to with societal perceptions of back pain, a plethora of healthcare providers that “treat” back pain with minimal experience with AS patients, and a poor patient understanding of what type of specialist is most appropriate to see if someone has symptoms of AS.

The results of this research will be used to develop educational programming to help individuals with back pain understand when they should see an AS specialist as well as reach AS patients earlier in their disease course to connect them with a rheumatologist experienced in the management of AS and other inflammatory conditions of the spine.

My kyphotic patient with the fused sacroiliac joints had an elevated CRP and ESR.  He was prescribed a NSAID and muscle relaxant to be taken on a regular basis and a biologic agent.  Over the next 3 months, his lab tests normalized, his fatigue abated, and his range of motion improved.  His sacroiliac joints remained fused.

References

1.Feldtkeller E et al: Age at disease onset and diagnosis delay in HLA-B27 negative vs. positive patients with ankylosing spondylitis. Rheumatol Int 2003;23:61-66

2.Deodhar A et al: Prevalence of axial spondyloarthritis among undiagnosed chronic back pain patients in the United States {abstract} Ann Rheum Dis 2014;73 (Suppl 2):198-199

3.Deodhar A, et al: Ankylosing spondylitis diagnosis in US patients with back pain: identifying providers involved and factors associated with rheumatology referral delay. Clin Rheumatol 2016;35:1769-1776