Patients with undiagnosed psoriatic arthritis, axial SpA often ‘bounced’ around providers
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Patients with axial spondyloarthritis and psoriatic arthritis routinely “bounce” from one provider to the next for years before finally receiving the correct diagnosis in a rheumatology clinic, according to experts.
Diagnostic delay is the obvious consequence. Patients may live with the condition for months or years before being treated and managed appropriately. Downstream consequences — including more severe disease, increased therapeutic challenges and reduced quality of life, among others — usually ensue.
For patients with axial SpA, part of the issue is that low back is fairly common, occurring in one in three adults over the course of a given year, according to a paper published in The Lancet by Harvigsen and colleagues.
“However, the majority of back pain is not due to any serious underlying structural problem or pathological process,” Y. Raja Rampersaud, MD, an orthopedic spine surgeon at the Schroeder Arthritis Institute at Toronto Western Hospital, professor of surgery at the University of Toronto and J. Bernard Gosevitz chair of arthritis research at the University Health Network, told Healio.
“Inflammatory back pain that occurs from axSpA is uncommon, but often presents similar to the majority of non-inflammatory — that is, mechanical or nonspecific — low back pain,” he added. “The lack of response to typical treatments for mechanical low back pain will often lead to a patient being bounced or a patient choosing to go from one provider to the next.”
Other issues in axial SpA pertain to uncertainties in the diagnostic criteria, a lack of reliable biomarkers and shifting epidemiology regarding its prevalence among men and women.
Epidemiology factors into to patient “bounce” in PsA, as well, according to Atul Deodhar, MD, MRCP, of Oregon Health & Science University.
“Approximately 3% of the U.S. population has skin psoriasis, but only around 30% of them have or will develop PsA,” Deodhar told Healio. “Overall, just under 1% of the U.S. population has PsA. Most of these people do not come to a rheumatologist.”
Rather, they might see a primary care physician or a dermatologist for their rash. However, if they do in fact have PsA with musculoskeletal or back pain, they may end up on the same carousel as those with axial SpA. Ineffective or inappropriate treatments can follow.
“The impact of inadequate symptom recognition and delay in appropriate referral can lead to inappropriate management, risk of complications and poor clinical outcomes, including irreversible damage,” Laura Passalent, PT, an advanced practice physiotherapist at the Schroeder Arthritis Institute, assistant professor at the University of Toronto and clinician investigator at the Krembil Research Institute, told Healio.
Understanding both the causes and impacts of diagnostic delays that lead patients from one doctor to another could have a positive impact on the patient experience and improve the overall care of these complicated and diverse patient populations.
‘Most common reason’ to visit the ED
According to a recently published systematic review and meta-analysis by Zhao and colleagues in Rheumatology (Oxford), patients with axial SpA worldwide experience an average diagnostic delay of 6.7 years.
“Indeed, diagnostic delay is a major concern for patients with spondyloarthritis and in particular axial spondyloarthritis,” Passalent said. “Some of the factors found to be associated with delayed diagnosis from this recent review was lower education levels, younger age at symptom onset and a lack of extraarticular manifestations.”
The initially variable nature of inflammatory back pain may also contribute to patients failing, or waiting, to visit a doctor, according to Rampersaud.
“Furthermore, atypical presentation of axial SpA and a high threshold for providers to order investigations may lead to incorrect or misdiagnosis,” he said.
A further complicating factor is that diagnostic delays are generally worse for women, particularly those with non-radiographic axial SpA, according to findings from Neuenschwander and colleagues in Arthritis Research & Therapy.
Women also may demonstrate different disease presentation than men, with more disease activity, fatigue and peripheral involvement, according to Passalent.
“In these cases, the quality of life goes down for women,” Deodhar added, noting that work productivity issues, absenteeism and early disability are all more common in women compared with men with axial SpA. “Their voice is not heard and they do not get proper treatment.”
Deodhar argued that education is critical to improving axial SpA diagnostic delays, particularly regarding the prevalence among women.
“Historically, the conventional wisdom was that ankylosing spondylitis is a man’s disease, and women do not get it,” he said. “We are now finding that non-radiographic axial SpA is equally prevalent in women.”
It is worth noting, then, that the prevalence of back pain in general is high regardless of sex or gender.
“Back pain is one of the most common reasons to see a primary care provider or go to the emergency department,” Rampersaud said.
In fact, musculoskeletal pain may account for as many as 25% of visits to primary care or the ED, according to Deodhar.
“About 20% of the U.S. population at any given time has chronic back pain,” he said.
However, despite these significant numbers, about 5% of these complaints will actually be related to axial SpA, Deodhar said. Finding these patients amid the sea of back pain complaints can be a near-overwhelming challenge.
Additionally, although there are diagnostic criteria for axial SpA, there are difficulties in assessing the sacroiliac joint.
“It is difficult to examine,” Deodhar said. “MRI is the best way to assess that joint, but even radiologists are not trained in the United States to know what is real sacroiliitis vs. stress from running.”
Overloading the joint does not suddenly lead to sacroiliitis, he added.
“It is not well known how much bone marrow edema is significant and suggestive of axia SpA, and what is just fluff,” Deodhar said.
All of these factors lead to excess burden on the health care system, according to Passalent.
“When patients are bounced from provider to provider, it incurs system-level costs associated with inappropriate investigations and treatment prescriptions,” she said.
A combination of research and education for patients, providers and the general public could help alleviate diagnostic delays and patient bounce in axial SpA. The same is true for PsA.
Education ‘so important’ for PsA
Further data from Zhao and colleagues demonstrated that the average diagnostic delay for PsA worldwide is 2.6 years. Although this is a shorter delay compared with axial SpA, a patient with PsA may see several providers in this interval before receiving the correct diagnosis.
A common issue in PsA is that a patient with a rash may visit a dermatologist, who diagnoses psoriasis but does not ask about further complications, according to Deodhar.
“A patient would not ordinarily tell their dermatologist about a swollen knee or back pain, and the dermatologist would not ordinarily ask,” he said.
However, this type of miscommunication is not restricted to the dermatology clinic, or any non-rheumatologist for that matter.
“Even rheumatologists commonly see patients with skin psoriasis but may not always be asking if there are joint aches and pains,” Deodhar said.
As with axial SpA, patient and provider education regarding the nature of PsA is critical, he added, noting that PsA can be asymmetric and oligoarticular.
“Sometimes it is only enthesitis, it may just be an Achilles problem or a plantar fascia problem or sausage toe,” Deodhar said. “Educating patients that these could be signs of PsA is so important.”
For Passalent, early peripheral joint presentation in PsA can be an additional contributing factor to diagnostic delays.
“It can often mimic other forms of arthritis, including osteoarthritis,” she said.
To make diagnosis even more challenging, PsA can be also present in people without psoriasis who merely have a family history of the disease, according to Passalent.
“Therefore, the threshold for investigation or specialist referral from primary care may be low in a person presenting only with musculoskeletal symptoms,” she said.
As with axial SpA, when patients do have musculoskeletal manifestations of PsA, they may see a rotating host of non-rheumatology providers who may be unfamiliar with the specificities of the disease.
“These providers may not be attuned to the nuances of these conditions,” Deodhar said. “Spine centers are commonly staffed by neurosurgeons who can perform operations but who are unlikely to be familiar with what is happening in the field of rheumatology.”
When these surgeons perform unnecessary, and often unhelpful, procedures, it creates a burden on the health care system.
‘Oops, I missed this’
“Once the patient has made it to a rheumatology office, the only thing a provider can do is write a letter to the other providers explaining that the patient has axial SpA or PsA,” Deodhar said. “One can use the letter as a subtle way to educate them. Maybe in the future they will think, ‘Oops, I missed this,’ and maybe they will not miss it the next time.”
This letter might go to a gastroenterologist who manages a patient with inflammatory bowel disease, a dermatologist managing a rash, or an ophthalmologist managing a patient with axial SpA or PsA and uveitis, according to Passalent.
However, Deodhar noted that educating the patients who have already received the correct diagnosis, and the providers who treated them previously, is only a partial solution.
“I am also concerned with the many patients out there who have yet to find their way to the rheumatology clinic,” he said. “This is where patient advocacy groups and societies can help.”
The Spondylitis Association of America and the National Psoriasis Foundation have each made information available to help both physicians and the lay public.
However, until those materials gain wider reach, Passalent called on the American College of Rheumatology, EULAR and other professional and governmental organizations to act as well.
“Promotion and dissemination of models of care that effectively screen for axial SpA and PsA can improve access to care and identify patients earlier to shorten time to diagnosis,” she said.
References:
Hartvigsen J, et al. Lancet; 2018;doi: 10.1016/S0140-6736(18)30480-X.
Neuenschwander R, et al. Arthritis Res Ther. 2020;doi: 10.1186/s13075-020-02337-2.
Passalent L, et al. J Rheumatol. 2020;doi:10.3899/jrheum.180787.
Zhao SS, et al. Rheumatology (Oxford). 2021; doi:1 0.1093/rheumatology/keaa807.
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