About 35% of patients with non-radiographic axial SpA told disease is ‘in their head’
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ORLANDO, Fla. — Many patients with non-radiographic axial spondyloarthritis experience symptoms for nearly a decade before receiving a diagnosis, according to a presenter at the 2022 Rheumatology Nurses Society Conference.
“The biggest challenge that we as rheumatologists have is that there are a lot of patients who have back pain,” Kurt R. Oelke, MD, of the Rheumatic Disease Center, in Wisconsin, told attendees, noting that this is one of the primary features of non-radiographic axial SpA. “The challenge is in weeding out the patients who do not have the regular type of back pain, but who have the inflammatory type of pain. Finding the uncommon cause of a common symptom can be challenging.”
Moreover, approximately 35% of patients are erroneously told that their non-radiographic axial SpA is “in their head,” he added.
In his talk, Oelke reviewed some common myths, diagnostic criteria and imaging difficulties in this condition. He also addressed the scant awareness of non-radiographic axial SpA among health care providers.
Regarding myths, Oelke stressed that neither common inflammatory biomarkers nor HLA-B27 positivity are diagnostic criteria for non-radiographic axial SpA .
“We cannot necessarily draw a blood test and identify a patient with non-radiographic axial SpA,” he said.
Oelke added that the condition is a clinical diagnosis.
“You need someone who knows how to do an exam to make a diagnosis,” he said.
However, even this can be difficult, largely because there are currently no validated criteria for non-radiographic axial SpA published by the American College of Rheumatology or other such organizations.
“Patients do not fit into nice boxes or paradigms,” Oelke said. “Patients are coming to the clinic with a host of problems, and we have to sort them out.”
This brought Oelke to the topic of imaging. Although it is true that non-radiographic axial SpA can be diagnosed using an MRI, Oelke noted that a significant degree of expertise is necessary to identify the condition.
“If you do order an MRI, if you do not have a radiologist who is used to identifying these patients, they can miss the diagnosis, as well,” he said. “They may not be used to looking for non-radiographic changes.
“There is estimated to be between a 5- and 8-year delay between development of symptoms and diagnosis,” Oelke added. “This can be a long road for some of these patients to take.”
The implication is that many health care providers, from primary care physicians to chiropractors, physical therapists to orthopedists, will see these patients on their journey without being aware of the specifics of this condition. Unfortunately, many patients also end up seeing more than one rheumatologist before the diagnosis is ultimately made.
There are negative clinical outcomes associated with this diagnostic delay, including decreased function, lower spinal mobility, negative psychological impact of the disease and less favorable response to treatment.
Oelke highlighted the broad cross-section of features that these patients may display, including inflammatory back pain before age 45 years, morning stiffness, improvement with exercise but not rest and alternating buttock pain.
Features of radiographic spondyloarthritis may also be present, including enthesitis, dactylitis, peripheral arthritis, extra-articular manifestations and a family history of SpA. He encouraged attendees to review emerging materials on non-radiographic axial SpA when they encounter patients with this constellation of symptoms.
“To decrease the diagnostic delay of nr-axSpA, we need to hone our detective skills,” he said.
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Oelke KR. Nr-axSpA: Out of the shadows, into the light. Presented at: Rheumatology Nurses Society annual conference; August 3-6, 2022.
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