You can participate in research studies about arthritis by using our ArthritisPower app to join our patient-centered research registry.
At the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting this year — ACR Convergence 2021 — more than 16,500 attendees and 600 speakers from more than 100 countries gathered virtually to share the latest research and address the most pressing issues for people living with rheumatic disease.
The CreakyJoints team soaked it all in — listening, watching, and learning so we could bring you the most relevant information to ensure you know what you need to better manage your condition and get better care.
We combed through hundreds of studies, attended sessions from top axSpa experts, and asked our team of patient and physician advisors to share the axSpa updates they deemed most important for patients.
Note: Axial spondyloarthritis is an umbrella term for a type of inflammatory arthritis that predominantly causes symptoms in the spine and pelvis. It includes two conditions: ankylosing spondylitis (in which there is joint damage that you can see on X-rays) and non-radiographic axial spondyloarthritis, which has similar symptoms but no damage is visible on X-rays. We will be using all three terms throughout this article.
The result: Our curated, patient-friendly guide to axSpa research and trends from ACR 2021. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.
1. Undiagnosed depression is common in axSpA.
Knowing that mental health conditions like depression are common in people with axial spondyloarthritis, researchers in Ireland screened 71 axSpA patients for depression during routine rheumatology visits, then looked at whether the results were connected to patients’ reports of disease activity and quality of life measures. They only included patients who did not already have a known diagnosis of depression.
They found that up to 24 percent of people had survey scores that were indicative of underlying depression. These patients also had worse disease activity and quality of life than those with normal scores on the depression surveys.
The researchers suggest that rheumatology providers should actively screen for depression in axSpA patients. One of the screening tools in the study is called the Hospital Depression and Anxiety Scale. If you’re concerned about whether you may have undiagnosed depression or anxiety, consider reviewing the questions with your provider so you can get help.
2. How many non-radiographic axSpA patients progress to ankylosing spondylitis?
We know now that within the axial spondyloarthritis family of diseases, there are two main kinds: non-radiographic and radiographic (known as ankylosing spondylitis). Both diseases are thought to cause similar symptoms and disease burden; the difference being that with nr-axSpA, there is no visible joint damage on X-rays — yet.
Of course, it’s better to not progress to radiographic axSpA, and experts are currently studying how to prevent this disease progression. The first step, though, is understanding how common progression is and what the timeline looks like. When Dutch researchers followed a group of 79 nr-axSpA patients over six years, they found that every two years approximately 10 percent progressed from nr-axSpA to AS.
The researchers plan to continue to study patient and disease characteristics to learn more about who may be more likely to progress; these patients might benefit from more aggressive treatment, such as starting biologics earlier.
3. There’s a notable lack of axSpA awareness among primary care providers
Diagnostic delays of 10 or more years are common in axial spondyloarthritis. A substantial factor is that people often go undiagnosed or misdiagnosed because other health professionals don’t suspect that their back pain and other symptoms could be due to axial spondyloarthritis, and they don’t get referred to a rheumatologist.
Researchers from Yale University and the University of Connecticut surveyed 138 primary care providers about axial spondyloarthritis (three-quarters were doctors; one-quarter were advanced practitioners, such as nurse practitioners.) Among the findings:
- 96% were at least familiar with the term inflammatory back pain, but 58% never or rarely assess it.
- 83% rarely or never order a test for HLA-B27, a genetic marker associated with axSpA
- 65% rarely or never order a test for C-reactive protein (CRP) in young patients with chronic back pain
- At least 75% never asked about uveitis or enthesitis, which are associated with axSpA
- 50% never or rarely ask about family history of spondyloarthritis
These findings indicate that there is a lot of room for improvement in educating primary care providers about axSpA symptoms and ordering tests to help diagnose it. It also shows how much people with inflammatory back pain and other axSpA symptoms need to advocate for themselves as they navigate the journey to getting diagnosed.
One way to push for better care is to ask your provider: “Are you sure my symptoms couldn’t be due to inflammatory back pain or axial spondyloarthritis?” or “Are you sure there aren’t any blood tests or imaging tests that can help figure this out?”
4. Many axSpA patients in remission may successfully taper biologics without experiencing flares
Of course, getting to remission — when you have low disease activity according to both patient and physician assessments — in the first place is not an easy feat with axSpa. But among those who do, can they safely stop taking biologic medication?
A study from Denmark sheds some insight on this very important question. Researchers identified a group of about 100 axSpA patients in remission for at least a year who were taking TNF biologics and had them gradually taper their medication over the course of a year, then followed the patients for two years. They found that about half had successfully tapered completely. Among the other half, patients were able to stay in remission on various lower doses even though they didn’t stop medication completely.
When researchers looked at which characteristics were associated with successful tapering, they found one strong predictor: physician global score. In other words, patients whose doctors assessed their disease activity to be low were able to successfully taper their medications.
5. Unemployment and challenges with working are very common in axSpA
People with axSpA may have debilitating back pain from a young age, which can affect them during their prime working years. New research at ACR explores and, importantly, helps quantify these issues.
In a study from Ireland, researchers looked at a national registry of people with AS. Among the 876 people for whom information was available about their employment status, about 22 percent were unemployed, which was much higher than the national average of 6 to 13 percent over the same time period. Another 24 percent of people said their axSpA limited their work ability.
What’s more, the use of advanced therapies was high among people who were unemployed — 75 percent reported taking biologics. Researchers called attention to one particular predictor of unemployment: reduced spinal mobility, noting that identifying this early and getting occupational or physical therapy supports might help keep patients working.
In separate research from an online survey of more than 1,800 axSpA patients spanning 13 different European countries, about three-quarters said that they had difficulty or thought they would have difficulty finding a job because of their axSpA. Though many different factors played a role, some worth paying attention to include challenges taking public transportation, needing customized shoes, not having university education, and having had to previously change jobs because of axSpA-related barriers.
If you’re struggling to work because of axSpA, research like this is important to be aware of if you’re trying to get workplace accommodations. It quantifies and validates the very real challenges this disease presents.
6. Artificial intelligence is coming to axSpA — and it may help standardize and speed up diagnosis
Diagnosing axSpA can be tricky for many reasons. Not least of which is that interpreting X-rays of the sacroiliac joint (the joint that connects the spine and the pelvis, where inflammation and damage in axSpA frequently starts) can vary widely depending on who is looking at the films and how much experience they have identifying sacroiliac joint damage.
One study out of Germany that got a lot of attention at ACR this year found that using what researchers called an “artificial neural network” — a form of machine learning — to read the X-rays of people with suspected axSpA could accurately diagnose the condition with good sensitivity (79 percent) and very good specificity (94 percent) compared to consensus judgement from a rheumatologist and radiologist reading the same X-rays. (High specificity means the artificial intelligence was particularly good at ruling out false positives, or diagnosing people with something when they don’t actually have it.)
In the future, doctors may be able to rely on this technology to streamline the process of diagnosing axSpA with X-rays, which is less expensive than using MRIs. It could also provide diagnostic expertise to places that wouldn’t otherwise have it, such underserved or rural areas.
7. Evaluating Crohn’s disease patients for inflammatory back pain can identify axSpA earlier
Axial spondyloarthritis and inflammatory bowel disease, such as Crohn’s disease, often strike together, so it makes sense to keep an eye out for the other when you’re diagnosed with one.
University of Chicago researchers wanted to see if they could identify signs of inflammatory changes associated with axSpA when patients were getting imaging (MRE) of their small intestine. Of 48 patients studied, 25 percent had abnormal sacroiliac joint inflammation detected on imaging. Most of these people were female, had intestinal damage from Crohn’s disease, and did not report symptoms of back pain.
The researchers suggest that MRE scans should be routinely evaluated for musculoskeletal abnormalities, which may be a unique way to identify asymptomatic or early-stage axSpA in people with Crohn’s disease while they are getting gastroenterology care.
8. A high proportion of ankylosing spondylitis and psoriatic arthritis patients use opioids as part of treatment
While opioids may have a place in pain management for certain rheumatic patients and certain circumstances, they don’t address the underlying causes of pain the way other treatments do. In conditions like axial spondyloarthritis and psoriatic arthritis, for example, NSAIDs can address inflammation and biologics may help prevent disease progression.
Researchers, led by Alexis Ogdie, MD, from the University of Pennsylvania, looked at a patient database to better understand the prevalence of opioid use and connection to disease burden. They found that about 21 percent of psoriatic arthritis patients (out of 828 total) and about 27 percent of ankylosing spondylitis patients (out of 334 total) received opioids. Patients were also using other treatments, such as NSAIDs, DMARDs, and biologics, so the opioids were likely in addition to, not instead of.
Increased opioid use was associated with higher disability and disease activity scores, which makes sense — people who are feeling worse and have more pain would be more in need of pain relief options.
The study reveals that many patients still experience chronic pain despite getting treatment for inflammation, which highlights the need for better pain management in these conditions.
9. Having more comorbidities with AS may affect disease burden as well as staying on treatment
Chronic diseases like axial spondyloarthritis don’t exist in a vacuum. Many people have additional medical conditions — known as comorbidities — that can affect their ability to manage their rheumatic condition for a variety of reasons. Spanish researchers shed more light on this issue by analyzing data on a group of 749 people with AS and following them over two years.
They found that people with more comorbidities had worse scores on self-assessments of pain and disease activity. What’s more, people with more comorbidities had a higher likelihood of stopping treatment (TNF biologics) for AS than those with fewer comorbidities.
The study didn’t get into details about which comorbidities might be more associated with treatment discontinuation or worse outcomes. However, research like this highlights the fact that it’s necessary to consider the whole patient when treating a chronic condition like AS. And the more rheumatologists and patients know about how and which comorbidities can affect care and outcomes, the more effectively they can manage someone’s AS.
It also speaks to the importance of making sure that you see a primary care provider and other specialists as necessary to identify and manage comorbidities, since it’s often not possible for the rheumatologist to do so.
You Can Participate in Axial Spondyloarthritis Research Too
If you are diagnosed with axial spondyloarthritis or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.
Afinogenova Y, et al. Awareness and Attitudes Regarding Axial Spondyloarthritis Among Primary Care Providers [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/awareness-and-attitudes-regarding-axial-spondyloarthritis-among-primary-care-providers.
Garrido-Cumbrera M, et al. Why Is It so Difficult for AxSpA Patients to Find a Job? Results from the European Map of Axial Spondyloarthritis (EMAS) [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/why-is-it-so-difficult-for-axspa-patients-to-find-a-job-results-from-the-european-map-of-axial-spondyloarthritis-emas.
Kieskamp S, et al. Radiographic Sacroiliitis Progression up to Six Years of Follow-Up in Patients with Non-Radiographic Axial Spondyloarthritis [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/radiographic-sacroiliitis-progression-up-to-six-years-of-follow-up-in-patients-with-non-radiographic-axial-apondyloarthritis.
Maguire S, et al. Identifying Predictors of Unemployment in Axial Spondyloarthropathy: Data from the Ankylosing Spondylitis Registry of Ireland [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/identifying-predictors-of-unemployment-in-axial-spondyloarthropathy-data-from-the-ankylosing-spondylitis-registry-of-ireland.
Maguire S, et al. Undiagnosed Depression in Axial Spondyloarthropathy and the Negative Impact on Patient Outcomes: Results of a Screening Study [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/undiagnosed-depression-in-axial-spondyloarthropathy-and-the-negative-impact-on-patient-outcomes-results-of-a-screening-study.
Ogdie A, et al. Association of Opioid Use and Opioid-Related Costs with Patient-Reported Outcomes in Patients with Psoriatic Arthritis or Ankylosing Spondylitis [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/association-of-opioid-use-and-opioid-related-costs-with-patient-reported-outcomes-in-patients-with-psoriatic-arthritis-or-ankylosing-spondylitis.
Poddubnyy D, et al. Detection of Radiographic Sacroiliitis with an Artificial Neural Network in Patients with Suspicion of Axial Spondyloarthritis [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/detection-of-radiographic-sacroiliitis-with-an-artificial-neural-network-in-patients-with-suspicion-of-axial-spondyloarthritis.
Puche Larrubia M, et al. Impact of the Number of Comorbidities on the Outcome Measures and on the Retention Rate of the First Anti-TNF in Patients with Ankylosing Spondylitis: Two-year Follow-up REGISPONSER-AS [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/impact-of-the-number-of-comorbidities-on-the-outcome-measures-and-on-the-retention-rate-of-the-first-anti-tnf-in-patients-with-ankylosing-spondylitis-two-year-follow-up-regisponser-as.
Quimson L, et al. Clinical and Imaging Characteristics of Spondyloarthritis Among Crohn’s Disease Patients [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/clinical-and-imaging-characteristics-of-spondyloarthritis-among-crohns-disease-patients.
Wetterslev M, et al. Dose Tapering of TNF Inhibitors in Patients with Axial Spondyloarthritis in Routine Care – 2-year Clinical and MRI Outcomes and Predictors of Successful Tapering [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/dose-tapering-of-tnf-inhibitors-in-patients-with-axial-spondyloarthritis-in-routine-care-2-year-clinical-and-mri-outcomes-and-predictors-of-successful-tapering.