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Nr-axSpA: A Community of Care Podcast Series

Join us for a new series of educational podcasts on non-radiographic axial spondyloarthritis (nr-axSpA) hosted by Dr. Jeffrey Stark, Head of Medical Immunology at UCB. Each episode of this series will feature a guest with expertise in nr-axSpA, including rheumatologists and patients living with the condition. Throughout the series, we'll explore the nr-axSpA disease state (and some common misconceptions about the disease), its impact on patients, and best practices to support the recognition and diagnosis of patients living with nr-axSpA by rheumatologists and other healthcare professionals who may see patients throughout their journey.

About the Host

Jeffrey Stark, MD, Head of Medical Immunology at UCB, also serves as Adjunct Assistant Professor of Medicine in the Division of Rheumatology at Emory University School of Medicine. Prior to joining UCB, Dr. Stark spent several years working fulltime in a rheumatology clinical practice. Dr. Stark serves as a corporate roundtable representative to the American College of Rheumatology (ACR) Rheumatology Research Foundation and is a member of the Medical Advisory Board of the Georgia Chapter of the Lupus Foundation. Dr. Stark is also a past President and Executive Board Member of the Georgia Society of Rheumatology.

Episodes

Join Dr. Jeffrey Stark and Dr. Victor Sloan in our first episode, as they discuss non-radiographic axial spondyloarthritis (nr-axSpA), including how it is defined and how it fits within the larger family of spondyloarthritides. Dr. Stark and Dr. Sloan will also tackle some common misconceptions about nr-axSpA, highlighting the large number of women living with nr-axSpA, differences in clinical presentations between men and women, and the severity of the disease as it compares with ankylosing spondylitis and other rheumatic conditions. We hope that this episode helps healthcare providers to understand the nr-axSpA disease state and how it is similar to and different from other spondyloarthritides.

Victor Sloan, MD, is the former Therapeutic Area Head for Immunology at UCB. Dr. Sloan is also Founder and Chief Executive Officer of Sheng Consulting. In addition, he serves as Clinical Associate Professor of Medicine in the Division of Rheumatology at Rutgers Robert Wood Johnson Medical School in New Brunswick, New Jersey, where he continues to see patients. Dr. Sloan has a special interest in the spondyloarthritides (including non-radiographic axial spondyloarthritis), which developed largely due to his work at UCB. He is a fellow of both the American College of Physicians (ACP) and the American College of Rheumatology (ACR) and is a widely published author of peer-reviewed publications in both basic science and clinical research.

Disclaimer (00:00 – 00:20)

This is an educational program sponsored by UCB. The information contained within this podcast is for your educational purposes only and is not intended to be medical advice. The guest speakers have been compensated for the presentation of this educational information. Healthcare providers should exercise their professional judgment when treating their own patients.

Introduction (00:20 – 02:40)

Dr. Jeff Stark (00:20)

Welcome. I'd like to introduce to you a new series of podcasts entitled The non-radiographic axSpA Community of Care Podcast Series. This is Dr. Jeff Stark. I'm a rheumatologist and head of rheumatology and medical affairs at UCB.

The goal of this podcast is to discuss similarities and differences between non-radiographic axial spondyloarthritis or nr-axSpA and ankylosing spondylitis or AS. Some of the topics that we will cover today include defining non-radiographic axial spondyloarthritis, understanding its epidemiology and demographics, challenging some common misconceptions associated with non-radiographic axSpA, and also exploring how the understanding of this condition by the community and the FDA have evolved over time. 

I'm very pleased to welcome with me today to the podcast a friend and colleague, Dr. Victor Sloan. Victor, please say a few words about yourself.

Dr. Victor Sloan (01:20)

Thanks, Jeff. As Jeff mentioned, my name is Victor Sloan. I'm the CEO of Sheng Consulting. Formerly, I was the therapeutic area head for immunology at UCB. I spent eight and a half years there, and I continue to be a paid consultant for UCB. 

In addition, I held a faculty appointment at Rutgers Robert Wood Johnson Medical School, where I'm clinical associate professor of medicine in the division of rheumatology. I continue to see patients a half day a week on a voluntary basis. I've been a practicing rheumatologist for 25 years, and I have a special interest in spondyloarthropathy, developed largely through my work at UCB. 

I'd like to talk about a patient I recently saw in clinic. I'd been seeing her for many years for another condition, and she started to complain of back pain. I administered the inflammatory back pain questionnaire, which was positive, and I then went on to order an MRI which was also positive for inflammation. And I want to make this point because the recognition of a patient with potential non-radiographic axSpA requires sensitization to the existence of the condition. And I can honestly say that that sensitization came through my work on this condition at UCB.

Definition of nr-axSpA (02:40 – 04:42)

Dr. Jeff Stark (02:40)

As I think about non-radiographic axial spondyloarthritis, one of the greatest barriers today is the general lack of awareness of the condition. And, unfortunately, we see that that lack of awareness contributes significantly to the long delay in diagnosis. That dramatic delay between the onset of disease and an actual diagnosis is, unfortunately, a common experience for patients living with this condition. At the same time, it's important to recognize that non-radiographic axSpA is a real disease and has a substantial burden associated with it. There are negative quality of life implications for patients who live with this disease and, therefore, a reason that we should be aware of it and shorten the path to diagnosis for these patients. 

Victor, I wonder if you could share with us a little bit about how you define non-radiographic axSpA in a clinical context.

Dr. Victor Sloan (03:32)

I think of this disease as a member of a larger family of spondyloarthritides, diseases that affect, in some way or another and in some frequency or another, the spine. We think of them as the seronegative spondyloarthritides because, in general, they're negative for rheumatoid factor. We further divide them into diseases that are predominantly peripheral or predominantly axial, so the more peripheral diseases, such as psoriatic arthritis or reactive arthritis, and then the more axial diseases, non-radiographic axSpA and ankylosing spondylitis. So when we refer to nr-axSpA, we're stating that non-radiographic axial spondyloarthritis does not have evidence of structural damage of the sacroiliac joint as seen by X-ray, unlike ankylosing spondylitis, where there is radiographic evidence of structural damage of the SI joint on X-ray. However, nr-axSpA does generally have evidence of inflammation that is sacroiliitis as seen on MRI.

Epidemiology and Demographics (04:42 – 06:00)

Dr. Jeff Stark (04:42)

So, Victor, it's very interesting that you mentioned those radiographic and other imaging-type changes associated with the disease. I think it's likely that the absence of X-ray features is one reason why non-radiographic axSpA is underrecognized compared with diseases like AS that do have radiographic features, that and the unfamiliarity with the disease. And yet this is not, as I understand, an uncommon disease but rather one that affects a significant number of people. 

Can you tell us a little bit about the prevalence of non-radiographic axSpA and ankylosing spondylitis?

Dr. Victor Sloan (05:16)

That's a really good question. And it's important to recognize that you're absolutely correct. There are about 3.3 million people with axSpA in the United States, which is about 1% of the US population. And that's comparable to that for rheumatoid arthritis. And interestingly, in the patients who have axSpA, it's about a 50/50 split between those who have non-radiographic axSpA and those who have AS. So to your point, those who have non-radiographic axSpA are probably underdiagnosed or underrecognized. So in sum, neither nr-axSpA nor AS is a rare disease. And we should be looking for it and finding it more often.

Common Misconceptions (06:00 – 14:43)

Dr. Jeff Stark (06:00)

Very interesting. I think that's not necessarily something that many practicing rheumatologists perceive but perhaps related to the degree to which these patients remain undiagnosed today. 

I think one of the other patterns that is very interesting is non-radiographic axial spondyloarthritis, like AS, is a disease that tends to affect a younger patient population. In fact, the typical age of onset of axSpA is around 28 years, and perhaps that may also have some implications for patients seeking medical care and achieving a diagnosis. Among the other features of non-radiographic axSpA, there are other opportunities, I think, to clear up misconceptions as well. One of those misconceptions, Victor, that we hear frequently from the community is that axial spondyloarthritis is a disease that primarily affects men more than women. 

Any thoughts on that subject?

Dr. Victor Sloan (06:55)

Well, that's absolutely true. There's a certain bias in the sense that we were taught for many years that this was the disease that's prevalent in men. I was taught that it was 9:1 men to women. We now know that in AS, it's more like 2:1 men to women and that nr-axSpA is at least as common in women as in men. So we have a situation where patients have a common complaint that is back pain. Most people don't think, "Ooh, back pain, AS." And then if they see a woman, the automatic assumption is it's not spondyloarthritis.

Dr. Jeff Stark (07:35)

Wow, that's very interesting, and I think raises the question about the diagnostic delay in women and whether that may even be more pronounced than it is for their male counterparts who have the same disease. 

One of the, I think, patterns that I've read about, Victor, and would love to have you share more about is the way in which non-radiographic axSpA presents in women versus men and whether that actually may be different between the two genders.

Dr. Victor Sloan (08:04)

Absolutely. It's pretty clear from a number of studies that the way women experience symptoms from non-radiographic axSpA is different. Women tend to have more widespread pain. They have more subjective disease activity, more fatigue, more peripheral involvement, and more functional impairment. And that when you think about these differences - and some of them are relatively nonspecific - you can see how that can complicate or make more difficult the recognition of non-radiographic axial spondyloarthritis in women. 

It's also interesting that, if you think about those clinical features, there's a significant overlap with those features of fibromyalgia, which can even further confound an accurate diagnosis in women. Interestingly, some studies have shown that the prevalence of nr-axSpA in women diagnosed with fibromyalgia may be up to 10%. Now, it's important to recognize those studies were observational studies without a control group, but nevertheless, the overlap between symptomatology of fibromyalgia and the symptomatology of non-radiographic axSpA makes the diagnosis even more difficult and, to your point, perhaps more delayed. 

So we know, for example, that the average time between onset of symptoms in men is 8.4 years while in women it's 9.8 years.

Dr. Jeff Stark (09:42)

So, Victor, that's fascinating information that you share about the diagnostic delay, and while I think we can appreciate that either 8.4 or 9.8 years is indeed too long for a patient to wait for a diagnosis, it's certainly shocking that women experience a longer diagnostic delay than their male counterparts with the same disease. 

You know, in thinking about the gender prevalence differences between ankylosing spondylitis and non-radiographic axSpA, it occurs to me that some of the barriers in understanding of non-radiographic axSpA may be in the tendency to think about it as not different at all from ankylosing spondylitis when, in fact, there are, as you have shared, some very interesting epidemiologic and demographic differences between the two. In speaking with members of the community, I often hear them refer to non-radiographic axSpA as mild AS or early AS. But according to what you've shared, I think we can agree that that's probably inaccurate nomenclature. 

I wonder if you could share your thoughts on the tendency to refer to non-radiographic axSpA as mild ankylosing spondylitis.

Dr. Victor Sloan (10:46)

It's an interesting point, Jeff. When you think about it, the only difference is that there's an absence of radiographic findings. Because when we look at the disease burden of nr-axSpA, it's similar to that of not only AS but also rheumatoid arthritis and psoriatic arthritis. 

So for example, if we look at patient-reported outcomes like pain and fatigue, they're comparable between nr-axSpA, AS, RA, and PsA. If you look at the SF-36, both physical and mental components, they're comparable between nr-axSpA, AS, RA, and PsA. And when we compare between nr-axSpA and AS, we look at the functional ability of these patients, which we measure with an instrument called the BASFI; disease activity, which we measure with an instrument called the BASDAI; and the quality of life as measured by SF-36. They're similar for patients with nr-axSpA and patients with AS. 

So what this tells us is the disease burden of non-radiographic axSpA is comparable to that of AS with the sole exception of spinal mobility, which we measure with an instrument called the BASMI. And that's perhaps not a surprise because patients with AS by definition have radiographic changes and, therefore, more limitation of spinal mobility.

When you put all this together, we've gotten an increased understanding of the natural history of the disease. We've got an increased understanding of the significant impact of nr-axSpA on patients. And so the FDA recognizes that nr-axSpA is a condition that is distinct from AS. And it's really important for rheumatologists to understand this because when patients with nr-axSpA are being treated, we want to avoid treatment with either suboptimal or inappropriate therapies like opioids, corticosteroids, or small molecules like methotrexate.

Dr. Jeff Stark (12:56)

Hmm, that's really interesting, Victor. As I think about our perspective as rheumatologists, we recognize the burdensome nature of diseases like rheumatoid arthritis and psoriatic arthritis and ankylosing spondylitis. And so these data that you're sharing that demonstrate that non-radiographic axSpA is equally severe in almost every way as these diseases we see day in and day out in clinic is an important reminder and, I think, clearly helps us to understand that “mild” is a mischaracterization when it comes to non-radiographic axSpA. The other perhaps mischaracterization that we hear sometimes is this term of early or even identifying non-radiographic axSpA as "early AS." 

Any thoughts on that particular nomenclature?

Dr. Victor Sloan (13:44)

Absolutely. That's another one that's pretty clearly wrong. We know that a small fraction of patients with non-radiographic axSpA may develop AS. So over a period of 2 years, one study showed that 10% of patients with nr-axSpA developed AS, and followed out to 10 years, 40% developed AS, but what that tells you is that 60% did not. And those 60% of patients continued to have non-radiographic axSpA, and they continued to have that significant and similar burden of disease and incidence of extraspinal manifestations over time. 

Closing (14:43 – 16:14)

Dr. Jeff Stark (14:43)

An important reminder for us. Thank you. So, Victor, in closing, I'd really like to thank you for joining us today and contributing your insights to this discussion. The information and data that you've shared are truly valuable.

Dr. Victor Sloan (14:54)

Thanks for the invitation, Jeff. I really enjoyed it.

Dr. Jeff Stark (14:58)

I'd also like to thank our listeners for tuning in and joining this podcast today. In closing, I'd like to provide some of the key points from this podcast that we hope everyone walks away with. One of those is that non-radiographic axSpA is an inflammatory disease that is common and, in fact, affects many individuals in the United States today. 

Although there are many misconceptions about the disease, we hope that the information we've shared with you today clears some of those up. 

We want everyone to remember that non-radiographic axSpA affects males and females nearly equally. In terms of severity, non-radiographic axSpA is not only comparable to ankylosing spondylitis but also to many other rheumatic diseases that we see in our clinics day in and day out. 

It's also important to remember that non-radiographic axSpA does not always convert to ankylosing spondylitis over time. In fact, many of these patients never convert, but yet they still experience significant and comparable disease burden that merits an intentional and appropriate approach to treatment. 

We hope that this discussion and the information we've shared with you today proves useful in your clinical practice as you take care of these patients day to day. And we hope that you'll join us for future episodes of this podcast. Thanks, and goodbye.

Dr. Victor Sloan (16:13)

Thanks, Jeff. Bye-bye.

Join Dr. Jeffrey Stark and Dr. Reeti Joshi in our second episode, as they discuss the impact that non-radiographic axial spondyloarthritis (nr-axSpA) can have on patients and how it compares with other rheumatic conditions. Dr. Stark and Dr. Joshi will explore the burden of nr-axSpA on a patient’s work and social life, the extraspinal manifestations that they may experience, and the many different HCP types that they may encounter in their long journey to diagnosis. We hope that this episode helps healthcare providers to recognize the daily burdens of patients living with nr-axSpA.

Reeti K. Joshi, MD, is a rheumatologist at Advanced Rheumatology Associates in Beaumont, Texas. Dr. Joshi completed her residency and chief residency at the University of Texas Health Science Center at Houston and subsequently pursued a fellowship in rheumatology and immunology at Washington University School of Medicine/Barnes-Jewish Hospital in St. Louis, Missouri. Dr. Joshi has received many awards and honors and has several publications in various rheumatology and internal medicine journals. Dr. Joshi has a special interest in the spondyloarthropathies, including ankylosing spondylitis and non-radiographic axial spondyloarthritis.

Disclaimer (00:00 – 00:20) 

  • This is an educational program sponsored by UCB
  • The information contained within this podcast is for your educational purposes only and is not intended to be medical advice
  • The guest speakers have been compensated for the presentation of this educational information
  • Healthcare providers should exercise their professional judgment when treating their own patients

Introduction (00:24 – 02:03) 

Dr. Jeff Stark (00:24) 
Welcome to the second episode in the nr-axSpA, a Community of Care podcast series. The goal of this podcast series is to describe the burden of disease of non-radiographic axial spondyloarthritis, or nr-axSpA. This is Dr. Jeff Stark. I'm a rheumatologist and Head of Medical Immunology at UCB. We're very excited that you can join us for this podcast today. We have several exciting topics that we will focus on, including the diagnostic journey of patients with non-radiographic axSpA, the impact of this disease on their work and social life, some of the extraspinal manifestations that are part of the disease, as well as different ways they may encounter and interact with the healthcare-provider community. We will also talk about the burden of non-radiographic axSpA compared with that of other common rheumatologic diseases. I'm very happy today to be joined by Dr. Reeti Joshi, and invite her to introduce herself and say a few words about herself, Dr. Joshi. 

Dr. Reeti Joshi (01:24) 
Hello, Jeff. Thank you for having me here. My name is Dr. Reeti Joshi. I'm a practicing rheumatologist in Beaumont, Texas. I completed my internal medicine residency training at University of Texas in Houston and my rheumatology fellowship in Washington University Barnes-Jewish Hospital in St. Louis, Missouri. I have been in practice in Beaumont for about eight years and have had the opportunity to work with several experts in the field of spondyloarthritis. My personal interest in this field dates back to several decades, as I am also a patient with ankylosing spondylitis. 

Patient Journeys (02:03 – 06:10) 

Dr. Jeff Stark (02:03) 
Thanks, Dr. Joshi. I think there's no doubt that you bring a unique perspective to this conversation.  

So Dr. Joshi, one of the things that never fails to surprise me is how common axial spondyloarthritis actually is despite our perceptions sometimes as a rheumatology community. In fact, from the literature, I understand that there are over three million individuals in the United States living with axial spondyloarthritis and that that number is fairly evenly divided between patients with ankylosing spondylitis and those with non-radiographic axSpA. I think that probably our sense that the disease is not as prevalent as it is in reality, has something to do with the delay in diagnosis for these patients, and that many of them remain undiagnosed. I think the most recent analysis I've seen on that subject suggests that on average, patients with axSpA have a delay of about five to eight years from symptom onset to diagnosis, which is hard to imagine. I wonder if you could share your thoughts about what the impact of this delay in diagnosis is on patients with non-radiographic axSpA. 

Dr. Reeti Joshi (03:09) 
So Jeff, the scenario that you're describing is very real and the impact, in a disease that tends to affect the younger people, is very profound. So as we know, the typical age of onset for axial spondyloarthritis is about 28 to 30 years, and you're adding about 7 to 8 years of further delay in diagnosis. The patients that we tend to see report significant impact on their social activities, quality of life, work productivity. And, it leads to delay in starting a profession, it leads to change in vocation, or postponement of starting a family. So the impact transcends their X-rays and transcends their physical exam. 

And as a woman with AS myself, I really have to highlight a dilemma. Women with AS tend to experience an even longer delay in diagnosis than men. So, on an average the delay is 9.8 years in women, versus 8.4 in men. And there is a conundrum of factors that may lead to that. Perhaps there may be lower awareness of prevalence of the disease in women compared to men. The disease tends to present differently in women compared to men and there is an important caveat to the way non-radiographic axial SpA presents in women. They tend to present more with chronic widespread pain, fatigue, emotional distress. They tend to have more peripheral arthritis than men. The enthesitis in women with non-radiographic axSpA tends to be different than in men with non-radiographic axSpA. There is further consideration that women may be diagnosed with fibromyalgia, which tends to dilute the chances that you will be able to diagnose this in a couple of visits. 

So not only do we see the delay impacting men; we see the delay impacting women adversely. And we also see that this ends up being a diagnosis that is given late in life, at which point in time the patients have undergone multiple surgeries, have been on multiple medications that may or may not have any effect on their inflammatory arthritis. And you end up seeing them in an absolute state of despair. It really is uplifting when you make that diagnosis for them, in more ways than one. And you reassure them that even though your X-rays are normal, you have a disease that I can help you with. 

Impact on Work and Social Life (06:10 – 14:17) 

Dr. Jeff Stark (06:10) 
Now I think these are helpful reminders for us, Dr. Joshi, and probably an important point of awareness for the rheumatology community. Just to be aware of how women with the same disease as men may present differently.  

Dr. Joshi, I'm so glad you raised the issue of work productivity in patients with non-radiographic axSpA. I think this is something that is quite profound to many of them, but not necessarily something that they bring to our attention when they see us in the clinic. One study that I saw looked at this question of work productivity in such patients. In this particular study, 45% of patients had to switch to a less physically demanding job. And actually, 24% of them left the workforce early and at a mean age of only 36 years. So really at the very beginning of their careers, the beginning of their professional life, right in really what we consider the peak of their years of work productivity. 

And although this study had some limitations, it was certainly a study composed of male patients who were serving in the military and who had ankylosing spondylitis, I think it does really illustrate in a profound way the degree to which axial inflammation can impair the productivity of patients who live with non-radiographic axSpA.  

Dr. Reeti Joshi (07:31) 
Non-radiographic axSpA affects the patient's productivity very uniquely. We talked earlier about how this is a disease affecting patients in their prime youth, and those are often your prime working years. There are things that the patients are needing, such as an accommodation for work, or they need to take some extra time off for their labs or their X-rays or to go see the doctor. Could their physical challenges force them to retire early simply because of the structural damage that has happened over the years? Or has the disease impacted them in a unique way where they perceive a stigma of carrying a disease and being less meaningfully available to their coworkers? 

To highlight this point, I just have to go back to my personal experience as a resident, how the perception of disease among coworkers is a real dilemma for these patients. And I can recall very vividly to an incident where I was unable to put a central line during an ICU rotation. The tremendous amount of guilt and personal disappointment I felt in admitting that to a coworker and the thought that I was unable to help that patient to the fullest. And those are things that I feel our patients with axSpA experience on a day-to-day level causing them to either drop out of work or find a change in vocation. 

Dr. Jeff Stark (09:16) 
Thank you for sharing that. I think that, for me, hearing stories like your own, really illustrate the degree to which patients are impacted by this disease. While we hear, for example, about their pain, they may not share with us about other prominent symptoms, like their fatigue, which may be equally impairing in terms of their ability to operate in their professional life. And so these are important reminders for us.  

As I hear you talk about that impact, I can't help but think that there are negative effects, not only on a person's professional life but also on their family and social life as well. And I'm so curious what you may have heard from patients that you take care of in terms of how non-radiographic axSpA affects them in those areas as well. 

Dr. Reeti Joshi (10:02) 
So you raised a really good point. We're talking about the burden on the patient and the changes in the work productivity which tends to have economic impact on the patient itself. There is a much wider net that this is casting for their family.  

So, for example, I have young moms who are unable to take care of their children. They are unable to diaper their children. They're unable to be there for their kids in certain activities, unable to play with their kids, unable to kneel down and do gardening with their kids. I also see, and this is particularly a sad situation where I've had a 28-year-old young man who is unable to drive himself for his office visits because he has a tremendous amount of axial pain and he cannot make the 2-hour drive to see his rheumatologist. So he has to have his family member bring him to the office. And then not only that, the fatigue tends to impair your ability to be social. And we're talking about young patients who now have constant pain, and they're unable to engage with their colleagues in a socially meaningful way because of the fatigue.  

Dr. Jeff Stark (11:24) 
Well, I think these are great reminders for us of all the many ways, both professional and personal, that our patients can be impacted by non-radiographic axSpA. But I also have to say your patients are particularly fortunate to have such an empathetic advocate in you.  

So Dr. Joshi, another topic that comes to mind as we think about the many ways that patients can be affected by non-radiographic axSpA is the extraspinal manifestations of disease. And certainly, this is a disease that's characterized by axial inflammation. And inflammatory back pain is among the important symptoms that these patients experience. But in fact, they can develop inflammation in other parts of their body outside the axial skeleton as well. I wonder if you could tell us a little bit about some of the extraspinal manifestations that patients with non-radiographic axSpA may experience. 

Dr. Reeti Joshi (12:15) 
Yes. So Jeff, you bring up a very important point in which, in my opinion, is the holy grail of this disease, is the extraspinal manifestations.  

So for example, peripheral arthritis is thought to affect about 41% of your patients with non-radiographic axSpA. We know that enthesitis, which is reported in about 44% of patients with non-radiographic axSpA, tends to have tremendous impact on their physical well-being and their economic work productivity.  

The other manifestation that we think of often is inflammatory bowel disease. And that's thought to be only 6% of the patients with non-radiographic axSpA. And that to me is the tip of the iceberg. Subclinical inflammatory bowel disease tends to affect almost half of the patients with spondyloarthritis that sometimes goes unrecognized. Another area that we frequently encounter is uveitis and psoriasis and then dactylitis. And then dactylitis is thought to be up to 7% of these patients with axSpA. But I find that, sometimes, this tends to be the most disabling extraspinal manifestation, depending on where the disease has impacted a patient.  

I can think back to a patient who is a makeup artist, and I've been taking care of her for several years. And throughout her journey, she has experienced every single extraspinal manifestation. However, none was as disabling as her dactylitis. I get really emotional when I think of these patients as these are things that we're not able to capture on an X-ray or things that we're not able to capture on a clinical note, but how it transcended into her work-life balance was what got me about this condition. 

Extraspinal Manifestations (14:17 – 16:31) 

Dr. Jeff Stark (14:17) 
The other place I think that this concept of extraspinal manifestations, a very important one, is in the area of how a patient's journey unfolds and the steps that may perhaps lead them to a rheumatologist ultimately. And I think certainly a recognition of all the different tissues and organ systems that may experience inflammation in these patients is, for us, a reminder that sometimes a multidisciplinary cross-therapeutic approach to care is needed. But I'm also cognizant that sometimes these manifestations may lead patients to a physician of another specialty, an ophthalmologist, for example, a gastroenterologist, even before they come to the attention of a rheumatologist. I wonder if you could share a little bit about your experience of how these extraspinal manifestations may lead patients to different components of the healthcare system even before they end up coming to a rheumatologist for evaluation? 

Dr. Reeti Joshi (15:16) 
Yeah. So you raised some really valid points that have impacted our patients and continue to impact their referral network. The patients with axSpA tend to have multiple touchpoints with different subspecialist groups. For example, primary care doctor and orthopedic doctor, physical medicine and rehabilitation specialist. We talked earlier about the extraspinal manifestations and how an ophthalmologist and a gastroenterologist are helping us in taking care of our patients.  

But I also want to throw in some of the unique opportunities to interact. In my town, I have had the pleasure of working with podiatrists. I am working with them so that I'm able to see the heel enthesitis and the dactylitis at a much earlier stage of the game than before.There's a significant crosstalk with the pain management specialists. And so those are all opportunities for us to interact with our colleagues both before and after diagnosis to provide comprehensive care, but also to cut down the delay in diagnosis. 

Different HCP Encounters (16:24 – 18:19) 

Dr. Jeff Stark (16:24) 
Those are great reminders for our community of rheumatologists. So in inflammatory arthritic diseases, I think our tendency oftentimes as a rheumatology community is to equate severity with radiographic progression. I think the unfortunate implication for some is that, because non-radiographic axSpA does not demonstrate radiographic features, it therefore represents a milder form of disease. And I've even heard some refer to non-radiographic axSpA as mild ankylosing spondylitis. And yet we have seen in some of the published literature on this topic that the disease burden of non-radiographic axSpA has been shown to be quite comparable to that of other inflammatory arthritic diseases with which we're very familiar.  

I wonder if you have any thoughts, Dr. Joshi, about the burden of non-radiographic axSpA and how it compares to other diseases with which we, as a rheumatology community, may be more familiar. 

Dr. Reeti Joshi (17:24) 
The whole term mild AS is just a misnomer. So just to compare patients with non-radiographic axSpA and patients with AS, although patients with AS have higher CRP levels, these two groups do not differ in health status, disease activity, or physical function.  

By that token, for a disease, like rheumatoid arthritis or psoriatic arthritis, where we have a very intentional approach to treatment, we need to have the same stringent measures to treat non-radiographic axSpA. Simply because the disease doesn't manifest on the X-ray is not the reason not to treat it.  

The burden of the disease tends to be similar in terms of fatigue, the severity of pain, as well as the quality of life impact.  

Comparability of Disease Burden (18:19 – 19:08) 

Dr. Jeff Stark (18:19) 
So Dr. Joshi, this has been a fantastic and really, I have to say, enlightening discussion today. As we approach the end of our time together, I wonder if there are any final thoughts that you could share about other specialists who may encounter patients with non-radiographic axSpA, and what is important for them to know about these patients? 

Dr. Reeti Joshi (18:38) 
So we want to validate that axSpA is a real disease with substantial burdens that affect multiple aspects of life beyond the spinal pain and the joints, flowing into their socioeconomic status, fatigue, and social interactions. And we also want to highlight that the disease burden is similar to that of other chronic inflammatory diseases, like RA or psoriatic arthritis. 

Conclusion (19:08 – 21:18) 

Dr. Jeff Stark (19:08) 
So as we close, I'd like to summarize some of the key points from our discussion today. One of these most important ones certainly is the extraordinary delay in diagnosis that patients with non-radiographic axSpA typically experience. And we know that during that long delay, these patients may see many providers of different types and different specialties and may unfortunately be misdiagnosed because of a low awareness of non-radiographic axSpA among the US healthcare community. It's critical for these other specialists who may be involved in the care of patients with axSpA, not only to be aware of the signs and symptoms of the disease, but also the importance of identifying these patients and referring them to a rheumatologist. 

We've heard some fantastic reminders on the impact of non-radiographic axSpA, and its negative implications for both work and social life, and a reminder as well of the diverse and heterogeneous extraspinal manifestations that may affect these patients. Perhaps most importantly for me is hearing reminders of the significant burden of disease for non-radiographic axSpA patients and how that burden in severity is actually quite similar to other rheumatic diseases, including not only AS but also rheumatoid arthritis and psoriatic arthritis.  

Dr. Joshi, just in closing, I would like to thank you for a fantastic time together today and a great discussion. I think that I and hopefully our listeners have really benefited from the insights and experience that you have shared, both personal and professional. 

Dr. Reeti Joshi (20:38) 
Thank you, Jeff, for having me here. I certainly enjoyed it. And I want to thank the audience members for being here. And we hope that through the stories and the tidbits that we've provided this helps enhance the care of our patients. 

Dr. Jeff Stark (20:58) 
Great. Thank you again. And I'll add my thanks to the audience as well. We hope that you'll be able to join us for future episodes of the non-radiographic axSpA, a Community of Care podcast series. Thanks again.

Join Dr. Jeffrey Stark and Summer in our third episode, as they discuss the burden of non-radiographic axial spondyloarthritis (nr-axSpA) from a patient’s perspective. Dr. Stark and Summer will discuss her journey with nr-axSpA and the symptoms that led her to seek care and ultimately obtain a diagnosis. They’ll also discuss how these symptoms have affected her life, including her career and her social and family life. We hope that this episode provides a valuable perspective on the impact of nr-axSpA and the importance of an early and accurate diagnosis for patients living with this disease.

Summer is a former certified nursing assistant who lives in Tennessee with her partner and 3 children. She was diagnosed with non-radiographic axial spondyloarthritis (nr-axSpA) in 2016 after experiencing daily back pain for many years prior. Despite seeing various specialists, they were unable to identify the cause of her back pain. In 2016 following her third flare of iritis that year, Summer’s eye doctor inquired about her general well-being and other symptoms she was currently experiencing, which included back pain, fatigue, and sleeping issues, etc. Recognizing that iritis could be associated with other underlying conditions, he ordered several labs including a HLA-B27 test, which returned positive. Summer was referred to a rheumatologist and was officially diagnosed with nr-axSpA based upon her symptoms, her laboratory findings, and her x-ray findings (which showed no evidence of fusion or structural damage).

Disclaimer (00:00 – 00:26)

  • This is an educational program sponsored by UCB
  • The information contained within this podcast is for your educational purposes only and is not intended to be medical advice
  • The guest speakers have been compensated for the presentation of this educational information 
  • Patient life experiences will vary and may not be representative of the experiences or perspectives of others
  • Healthcare providers should exercise their professional judgment when treating their own patients

Introduction (00:26 – 02:02)

Dr. Jeff Stark (00:31)
Hello, and welcome to the third in a series of podcasts called Non-radiographic axSpA: A Community of Care Podcast Series. The goal of this podcast is to learn about non-radiographic axial spondyloarthritis or nr-axSpA from the patients' perspective. My name is Dr. Jeff Stark. I'm head of medical immunology at UCB, and I'm very pleased to be joined by Summer, a patient who has lived with the disease of non-radiographic axSpA and will share insights from her patient journey with us today. Our podcast today will focus on several topics. These include disease burden, the impact of non-radiographic axSpA on daily activities, career and family, the diagnostic journey, and the impact of having an accurate diagnosis. Summer, please introduce yourself and tell us a little about yourself.

Summer C. (01:26)
My name is Summer. I'm 38. I'm currently unemployed. I've been unemployed for two years. Been seeking disability during that timeframe. My family situation is; I'm single. I have two kids that I raise by myself, and their father passed away about four years ago. And I was 34 years old when I got my diagnosis but had suffered for many years prior to that with symptoms.

Dr. Jeff Stark (01:58)
Yeah. That's, I think, unfortunately all too common a story that we hear from patients who live with non-radiographic axSpA. Thanks for joining today and sharing your story with us.

Summer C. (02:07)
Thank you.

Disease Burden (02:08 – 05:30)

Dr. Jeff Stark (02:08)
Summer, as we think about the journey that people with non-radiographic axSpA undergo on their way to diagnosis, oftentimes back pain is a key part of that journey, sometimes the earliest symptom that people experience. And yet we know that even though back pain is common across the board, that this particular kind of back pain in non-radiographic axSpA may be different than that more common type of back pain that everybody experiences from time to time. I wonder if you could tell us a little bit about what your symptoms were like when they first began and how they changed over time?

Summer C. (02:44)
Yes. Absolutely. When my back pain first started, it was lower back pain and it eventually over time moved up through my entire back. It was not very significant pain when it first started. Because it continued over time, I was seeking medical attention for that. And I just kept getting told, "Oh, you're too small. It's because you're pregnant." And I really just ignored that and thought that you know, they're right. This is what's wrong with me. Eventually it got the point that I couldn't get up out of the floor because of the pain. I knew then I had to find out what was wrong because that was not normal. And at that point, I started officially seeking answers to what was causing this problem.

Dr. Jeff Stark (03:33)
Thank goodness that you pressed further to try and get to the bottom of that. I think that as we hear these stories from patients, pain is almost universally a part of that story and in particular back pain just as you've mentioned, Summer. But that's not the only way in which the disease affects people. And we hear stories of other symptoms like stiffness and fatigue and then some other interesting symptoms as well that may affect areas like the eye. Things like Uveitis or Iritis or Enthesitis and inflammation of tendons or ligaments. And it's really not just the pain I think, but the fatigue and these other symptoms as well, that really can impair people's quality of life in a way that's just as severe as some of the more common diseases we see in rheumatology. I wonder if you could tell us if you've experienced any of these other symptoms, and maybe a little bit about the impact they've had on your life?

Summer C. (04:29)
Yes. As far as these other symptoms go, a lot of the other symptoms that can be tied to having this is more impactful, for me, than the pain is. And the fatigue is so exhausting and it is just always there. It's a permanent state of being exhausted. You can't get past it, no matter what you do. And then the Uveitis and Iritis, I had so many flare-ups of Iritis that it permanently damaged my right eye. So my eye no longer works the way that it's supposed to. My pupil doesn't dilate, so my depth perception is off. My ability to focus when light changes. All of the things that your eye is supposed to do, my eye does not do like it's supposed to. So it makes them work harder. It causes more fatigue. It causes me problems driving. All of which are very big impact in my life.

Impact on Career and Family (05:30 – 09:09)

Dr. Jeff Stark (05:30)
It's really helpful to hear about your symptoms and the severity of them, really the way in which they affected you. For many people with non-radiographic axSpA, those symptoms are severe enough that they interfere with their ability to work. And I know you mentioned that earlier as well. It's really certainly not only you who experiences that, but a common experience for people living with this disease. In fact, in one study in the literature, 45% of patients with axial spondyloarthritis had to switch to a less physically demanding job. And in that same study, what was remarkable to me was that almost a quarter of them left the workplace early, and they left the workplace not at the end of their career but more at the beginning. The mean age at which they left the workplace was only 36 years. I wondered if you could maybe share with us in a little more detail how having non-radiographic axSpA has affected your ability to work?

Summer C. (06:26)
That's very interesting because the data from that study is very correct. I left work when I was just 37. My job has always been very physically demanding. I was a CNA at the time that I left. But I have always done some aspect of healthcare throughout my journey of working and it wasn't so much that I made the decision to leave. My pain and all the other symptoms that I had, had reached a point that they asked me to leave work because it was impacting my ability to do my job so much.

Dr. Jeff Stark (07:03)
Well, that's especially difficult when it's not just limitations that you notice yourself but limitations that others notice about you. As we think even further about the impact of the disease, certainly it affects people professionally in terms of their working life but also I think for many people personally in other aspects of their life. Things like their family and their social life, I wonder if there are any ways that you would feel comfortable sharing that non-radiographic axSpA has affected you in those areas.

Summer C. (07:35)
Yes. Absolutely. With this a lot of people don't think about how the depression and anxiety can have an impact on what happens in your daily life. And my anxiety and depression has gotten so bad with this that it impacts my ability to have a functioning social life. I get nervous even talking to my close family; my sisters, my mother, my father. I'm just afraid people won't understand and that they won't be accepting of what's happening. But they also are unable to understand how a person is always so sick that they can't make it to an event. And eventually, people just stop asking you to come to things, so that can be very, very difficult to deal with, as far as, outside of the social aspect and a more family and private environment. I've been unable to have a relationship successfully because people don't want to be with somebody that's always sick at such a young age. They don't want to have to take on taking care of somebody just yet. They're not at that phase of life. People just don't want to take on that burden, and it gets very lonely, and it's very hard to live that way.

Dr. Jeff Stark (08:51)
Well, Summer, thank you for having the boldness to share that. I think that's a side of the disease that many members of our audience don't ever have the chance to hear, and yet, it's great for them to realize that that is a very real way in which non-radiographic axSpA affects people. Thank you for sharing that.

Summer C. (09:09)
Thank you.

Diagnostic Journey (09:10 – 12:00)

Dr. Jeff Stark (09:10)
Summer, another part of your journey that you mentioned that I think is unfortunately common for people with non-radiographic axSpA is this delay in diagnosis. And when that has been looked at in the literature, this delay is pretty dramatic. So that period of time, from which symptoms begin to when a patient has an accurate diagnosis, is on average five to eight years. When you compare that to some other diseases that we see in rheumatology, things like rheumatoid arthritis that typically has a delay of less than a year, it becomes clear how unique that is to axial spondyloarthritis and the way in which axial spondyloarthritis patients are affected disproportionately by this delay in diagnosis. 

We hear from patients, as well, that oftentimes during this period of delay, they're seeing physicians. They may not necessarily be the right type of physician but oftentimes there are many different physicians or healthcare professionals who are involved in their care during this time. I wonder if you could tell us a little bit of detail about your own diagnostic journey and the delay in diagnosis that you had.

Summer C. (10:19)
Absolutely. So for me, I'm a little outside of the box in this diagnosis delay because it took me 19 years to get my diagnosis initially. And a lot of that, I do want to make clear, is because I stopped seeking treatment, over the course of that time, a couple of different times. And so that in itself did contribute to the extension of how long it took to get my diagnosis. 

Initially, doctors did not want to believe me and they were sending me to mental health professionals, and just trying to put me on antidepressants. And everything that they tried made me sicker and would make me want to give up. I did go through a phase where they were trying to send me to a pulmonologist thinking maybe I had asthma and that was causing some of my issues, and at one point even a cardiologist. My eye doctor was very involved, and in fact my eye doctor is who eventually led me down the road of the correct diagnosis. When I started having all the issues with iritis and it got to that severe point of damaging my eye, they knew something wasn't right and they started doing bloodwork and they made the recommendation that I go see a rheumatologist. That is what finally got me my diagnosis of non-radiographic AS.

Dr. Jeff Stark (11:49)
Well I think it's perfectly understandable that you experienced some up and downs over those years, but very thankful that you ultimately didn't give up and pressed on until you got an accurate diagnosis.

Summer C. (12:00)
Absolutely.

Impact of Accurate Diagnosis (12:01 – 15:14)

Dr. Jeff Stark (12:01)
Summer, hearing you share some about your journey to diagnosis and some of the pathways that were, perhaps, wrong ones that you went down—we understand that this is common as well and that people are often given inaccurate diagnosis for a period of time until they ultimately arrive at the correct one. 

Unfortunately, what studies tell us is that people who have this delay in an accurate diagnosis and, therefore, a delay in getting started on appropriate treatment, often times, have a greater impact of disease. So they tend to have lower quality of life and worse outcomes and a less favorable response to treatment even once they are started on appropriate treatment. And that can be measured in various ways through disease activity measures or functional measures, but even things like mobility, the range of motion that people have, and the way that they are affected by their disease in that way. I wonder if you could tell us a little bit about the way that that delay and having an accurate diagnosis affected you personally.

Summer C. (13:10)
So for me, a lot of this was a difficult challenge. They tried to diagnose me with mental health problems, initially, as opposed to actually trying to figure out what was wrong with me. So that was a challenge. And of course, now I do have depression and anxiety that I deal with, and I'm very sensitive to a lot of medications, which make me sicker. So it makes it very hard to find a good and accurate treatment course from myself. So my doctors tend to struggle with that a little bit, and I struggle with dealing with that. But the struggle you go through trying to get that accurate diagnosis, like you said, it results in things like your range of motion being decreased. Because, over time, your body is continuing to deteriorate while you're seeking out this correct diagnosis and a good treatment plan. And so, my arms, I can't move my arms like I used to. I can't get to my back so it makes it challenging when I try to wash my back in the shower. Shaving is difficult. I actually have to have a seat to sit on in the shower so I can shave my legs because I can't move like I used to move. And, at one point in time, I was going through a flare that I couldn't even get my shoes on without help because of the way you have to move your joints in order to do these things. And people don't think about how that can occur because they think so much about this being specifically a back thing and it's not. It's a very systemic problem.

Dr. Jeff Stark (14:53)
Thanks, Summer. Once again, you've shared some really, I think, intimate but also very specific details of the way that your disease affects you. And these are not things we hear when we read studies about this disease. And so, for our audience, it's really great to hear the very personal experience of how this disease affects you and your ability to function.

Summer C. (15:14)
Thank you.

Conclusion (15:15 – 19:34)

Dr. Jeff Stark (15:15)
Summer, as we begin to wrap up our time together today, I just want to say thank you. You have been so articulate in sharing what this journey has looked like for you. Your openness and your honesty about some of the symptoms that you've experienced and the challenges that you've had along the way has been really enlightening for us and gives us a real sense of the way in which non-radiographic axSpA can affect patients living with that disease in so many and diverse ways.

I wonder if, as we're closing, there is anything that you would like to share that you just wish other people knew about non-radiographic axSpA and what that personal journey of living with the disease looks like.

Summer C. (15:56)
Sure. So one of the things I feel like isn't as much talked about and addressed when it comes to this disease is the impact that it can have on your heart and lungs. I feel like in a lot of ways, any of the things that I try to research or any of the doctors that I talk to and things they're less aware and knowledgeable about: how it can affect your heart and lungs. And yet that is something that is a symptom of this disease, and it's been a very, very big impact on me as well. And because that is so missed in the topic of discussion, it can lead to so much more problems in your life. So it's scary, because that's not addressed like I feel it should be.

Dr. Jeff Stark (16:59)
Summer, thank you for sharing about those personal aspects of the disease that you have lived with. I think you're absolutely right. When we think about non-radiographic axSpA, we tend to think about what we consider the cardinal symptoms of disease, the back pain. And while certainly that is a common experience and something that almost every patient with this disease lives with, it's a great reminder for us that there are many other ways it can affect people. Other parts of the body that can be affected and other ways that patients' quality of life can be impaired outside of back pain alone. 

And for me, hearing you describe that, it really illustrates some of the key points that we're hoping our audience walks away with from this podcast. Certainly, recognizing that non-radiographic axSpA is a disease that caries a high disease burden with it, and therefore it can potentially have a negative impact on both personal and professional aspects of patients' lives. 

You've really shared with us, I think in a very personal way, how that diagnostic journey that you underwent can be very long and complicated and certainly that's true for many patients. But also for me a word of hope, how at the end of that diagnostic journey, an accurate diagnosis can still bring relief and much needed help for patients living with non-radiographic axSpA. As we think about those patients who, like you, are living with this disease, I wonder if there is any advice or message that you would want to share with them?

Summer C. (18:30)
Some advice that I would like to offer to patients going through this journey: from the very beginning, try to keep yourself active. That is one of the most important things with this disease, because activity helps keep your joints from becoming stiff and less mobile. So the activity is a huge part of trying to be successful through this journey. 

Dr. Jeff Stark (18:54)
I really appreciate the way in which you have opened your life to us, so to speak, today. And allowed us to really understand what living with this disease has been like for you. 

Thank you for your openness and your candor, and for your real vulnerability in opening this window into your life and helping us to understand how living with non-radiographic axial spondyloarthritis has affected you personally.

Summer C. (19:20)
It has been my pleasure. And I really hope that this information can be helpful to others going through this journey.

Join Dr Jeffrey Stark and Dr Anthony Turkiewicz in our fourth episode, the first in a two-part discussion on the recognition and diagnosis of patients living with non-radiographic axial spondyloarthritis (nr-axSpA). During this episode, Dr Stark and Dr Turkiewicz will review the clinical manifestations to consider when evaluating a patient with suspected nr-axSpA. Dr Stark and Dr Turkiewicz will discuss some of the challenges that currently limit the recognition, referral, and timely diagnosis of patients with nr-axSpA. They’ll also review some best practices and information for consideration when making a diagnosis of nr-axSpA (including key features of inflammatory back pain, relevant SpA features, and objective signs of inflammation that can inform the diagnosis). We hope that this discussion helps improve the recognition and diagnosis of patients with nr-axSpA.

Anthony M. Turkiewicz, MD, is Director of the Clinical Research Unit at Rheumatology Associates in Birmingham, Alabama. Prior to this role, Dr Turkiewicz served as Assistant Professor of Medicine and Associate Director of the Arthritis Clinical Research Program at the University of Alabama at Birmingham School of Medicine. Dr Turkiewicz received his medical degree from Georgetown University School of Medicine and completed his residency and rheumatology/allergy fellowship at Georgetown University Medical Center in conjunction with the National Institutes of Health (NIH). During his time in Washington, DC, Dr Turkiewicz received an NIH Intramural Research Award grant for investigating therapeutic approaches for the treatment of spondyloarthropathy. Dr Turkiewicz has served as a principal investigator on over 75 clinical trials evaluating the use of biologic therapies for the treatment of patients with autoimmune diseases. Dr Turkiewicz is the recipient of several awards and honors, including an American College of Rheumatology (ACR)/REF Fellowship Training Award, the Washington DC Rheumatism Society Research Award, and the Clinical Immunology Society Award. He serves as session moderator and abstract reviewer for the ACR Annual Research Meetings. Dr Turkiewicz has published a number of book chapters and peer-reviewed original journal articles, and he serves as a reviewer for Arthritis and Rheumatology, Annals of the Rheumatic Diseases, and other journals. He also serves on the Board of Directors of the Arthritis Foundation, Alabama/Southeast Chapter and is active in state and national arthritis education and advocacy initiatives.

Disclaimer (00:00 – 00:20)

  • This is an educational program sponsored by UCB
  • The information contained within this podcast is for your educational purposes only and is not intended to be medical advice
  • The guest speakers have been compensated for the presentation of this educational information 
  • Healthcare providers should exercise their professional judgment when treating their own patients

Introduction (00:20 – 02:06)

Dr Jeff Stark (00:20)
Welcome to the fourth installment in the non-radiographic axSpA, a Community of Care podcast series. This is Dr. Jeff Stark at UCB. I'm head of medical affairs for rheumatology and delighted that you can join us for this ongoing discussion. The podcast you're joining today is the first in a twofold discussion on considerations when diagnosing non-radiographic axial spondyloarthritis or non-radiographic axSpA. The goal of this podcast is to explore the clinical manifestations of non-radiographic axSpA when diagnosing patients with this disease. 

We'll cover some important topics today and these will include some of the current challenges that limit the recognition and diagnosis of patients with non-radiographic axSpA. We'll also talk about how to approach a clinical diagnosis of such a patient as well as the role that other specialties play in helping to recognize patients and refer them to rheumatology practices. 

I'm very delighted today to be joined by Dr. Anthony Turkiewicz, someone who brings some extensive experience in this area through the practice of rheumatology, and also specifically in caring for patients with non-radiographic axSpA. 

Anthony, please, tell us a little bit about yourself.

Dr Anthony Turkiewicz (01:31)
Thanks, Jeff. Yes, my name is Anthony Turkiewicz. I'm director of the Clinical Research Unit and partner here at Rheumatology Associates in Birmingham, Alabama. My focus in research-- I mean, my clinical practice has been in the spondyloarthropathies having developed a consortium for early spondyloarthropathy patients during my time at Georgetown University and at the NIH 18 years ago. As a member of SPARTAN and GRAPPA, I've participated as principal investigator in a number of the spondyloarthropathy clinical trials focusing on treatment as well as early detection and diagnoses of the diseases.


Diagnostic Journey (02:06 – 04:47)

Dr Jeff Stark (02:06)
Thanks, Dr. Turkiewicz. So glad you can join us today. As I think about patients with this condition, one thing that always stands out to me is the dramatic delay that the typical patient has between the onset of their symptoms and when they are correctly diagnosed with non-radiographic axSpA. 

And when you look at the data in this area, although we as a community are improving a little bit over time, the latest data still tell us that a diagnosis of axSpA takes five to eight years on average.

It's amazing to think of a patient suffering with the disease in the absence of a diagnosis for that length of time. I wondered, Dr. Turkiewicz, with your extensive clinical experience in this area, if you could share a story of a patient, maybe, who experienced a long delay of diagnosis. Someone maybe who had inflammatory back pain but was mistaken for having back pain of a more mechanical cause.

Dr Antony Turkiewicz (02:58)
Sure, Jeff. So I've seen in my clinic a number of examples. One patient in particular that exemplifies this often-frustrating journey to diagnosis, it was a 32-year-old Caucasian female and it was a teacher here at a local college. And she had complaints for just about nine years of chronic low back pain. And she had talked to her primary care physician about the pain, really no antecedent trauma, no sciatica type symptoms but it was peculiarly, exceptionally painful late at night. Required her to ambulate, get out of the bed. Activity improved her pain. She had lumbar imaging that ended up revealing some small disc bulging at L4-L5 and it was felt that she had degenerative lumbar disc disease.

She underwent subsequent evaluation by a chiropractor, a physical therapist, pain management, and then she was going to be referred onto neurosurgery. Pain management had performed two lumbar epidurals really without much success. She felt the NSAIDs had done just as well, and there was consideration for even surgery. Five months ago, she had her first episode of right eye uveitis that was diagnosed and evaluated by a local ophthalmology. When asked about her comorbid conditions by ophthalmology, she revealed her 10-year history of back pain, and the ophthalmologist then consulted me. So when I saw her here in the clinic, she gave that classic inflammatory back pain history. And while her X-ray showed no significant sacroiliitis, and that her HLA-B27 was negative, her MRI showed some fairly classic bone marrow edema in the SI joints, which was strongly suggestive of non-radiographic axSpA.

Challenges with Diagnosis (04:47 – 07:22)

Dr Jeff Stark (04:47)
That's really an amazing story, unfortunate for the patient, but great for our audience I think in terms of how many learning points really there are there. And as I hear you describe that patient's history, some of the red flags and opportunities where she could have been caught earlier, and had an earlier diagnosis with some of those back pain features, for example, that she experienced, and ultimately that episode of uveitis that unlocked that mystery for her. 

But although this patient story seems very dramatic in the retelling, it's unfortunately, I think very common among patients with this disease and what they typically experience before they achieve diagnosis and arrive in a proper care setting.

Dr Anthony Turkiewicz (05:29)
Yeah. Absolutely. Yeah. And again, this is one example of many of the cases we see here.

Dr Jeff Stark (05:35)
Dr. Turkiewicz, as I think about that clinical story that you shared from your practice that unfortunately, is all too common, it causes me to think about the reason behind that story and why it is that so many of these patients with non-radiographic axSpA take so long to be diagnosed. Any thoughts about why that might be?

Dr Anthony Turkiewicz (05:53)
Yes, Jeff. In general, I think there still is this general lack of awareness of non-radiographic axSpA. I think hopefully with endeavors such as these, healthcare community will become better educated. This being said, it's not just the primary care physicians or the chiropractors or the orthopedist who may be missing some of these patients. Patients with undiagnosed non-radiographic axSpA can also be found in our own rheumatology practices. 

There was a study, the prevalence of axial spondyloarthritis study, the PROSpA study, that was a multi-center study conducted at US rheumatology centers, and we had participated in that study. In that analysis, the patients were required to have chronic back pain for three months beginning at less than 45 years of age, no prior SpA diagnosis, and have at least one of three spondyloarthropathy features. 

Overall, among the existing rheumatology patients, axSpA was diagnosed in just under 40% of patients. And of the 348 patients who met ASAS criteria for axSpA, 68% were characterized as having non-radiographic axSpA. And so what we see from this is that as rheumatologists, we are missing some of these patients as well. And also worth pointing out I think challenging to some is the lack of a specific ICD-9 or 10 code for non-radiographic axSpA.

Clinical Diagnosis of nr-axSpA (07:22 – 14:06)

Dr Jeff Stark (07:22)
Those data are so interesting, especially the observation about 68% of those patients diagnosed as axSpA had non-radiographic axSpA. It actually makes one wonder if the diagnostic barriers are even greater for non-radiographic axSpA patients than for AS patients. 

One of the questions that I'm often asked in having conversations with the rheumatology community about non-radiographic axSpA is whether there are diagnostic criteria that would help to make this an easier process for the clinical community. And unfortunately, although we do have classification criteria for non-radiographic axSpA and for axSpA in general, we don't have validated diagnostic criteria that are widely used across the rheumatology community. 

As we think about those two kinds of criteria, I think it's important for us to understand the difference. Classification criteria are used to create a well-defined relatively homogeneous cohort, primarily for purposes of clinical trials. And because that is the purpose of classification criteria, they have high specificity, but unfortunately what's sacrificed in maximizing specificity is sensitivity. And what that means is that classification criteria may miss individuals who truly have the disease.

That's different than diagnostic criteria, which are used to identify as many patients as possible with the condition and in doing so they maximize sensitivity. Unfortunately, we recognize that without widely adopted diagnostic criteria, there are patients with non-radiographic axSpA who will remain unrecognized and undiagnosed in the healthcare community. Dr. Turkiewicz, as we think about this complex issue of diagnosis, I wonder if you could share with us a little bit of your own clinical perspective about how you might approach the diagnosis of a patient with non-radiographic axSpA in your own clinical practice.

Dr Anthony Turkiewicz (09:20)
Sure, Jeff. As we had discussed the clinical diagnosis of non-radiographic axSpA can be challenging. And the first step in approaching a patient with chronic back pain is to determine whether that back pain is mechanical or inflammatory. Among patients with chronic back pain, approximately 5% are likely to have axSpA, but if you make that back pain inflammatory, the probability increases approximately three-fold, just under 15%, right? About 14%.

Dr Jeff Stark (09:51)
So it seems like this concept of inflammatory back pain is an important one. As I think back to the patient case that you shared, I remember that that patient exhibited some of these inflammatory back pain features. 

I wonder if you can tell us a little bit about what those features of inflammatory back pain are and why they're important.

Dr Anthony Turkiewicz (10:08)
Sure. More than any other measure we discussed, that description of a patient's back pain which again is simply obtained by thorough history, it's so pivotal to the workup of these patients. 

So characteristic symptoms of inflammatory back pain and axial spondyloarthritis include an age of onset of less than 40 years old, it's an insidious onset, there's improvement with exercise and no improvement with rest. In fact, rest can exacerbate the pain. And characteristically, the pain is at night and improves as the patient gets up. For those patients that have this inflammatory back pain, we then evaluate for the presence of additional spondyloarthritis features. The presence of additional features can increase the probability of axSpA.

Dr Jeff Stark (10:57)
So this is very interesting. It almost seems that there is a step-wise approach to the evaluation of these patients that maybe allows us to have increasing confidence as we go along and find additional elements of evidence to support a diagnosis. These spondyloarthritis clinical features that you've mentioned I think are an important part of that and data that I've seen suggest that having one or two of those clinical features actually increases the probability of an axSpA diagnosis to somewhere between 35% to 70%. 

I wonder if you could share with us a little more specific information about what those features are and, in particular, some of those features that clinicians should be aware of in these patients.

Dr Anthony Turkiewicz (11:38)
When we think about the additional features beyond the inflammatory back pain in spondyloarthritis, we think about enthesitis, dactylitis, uveitis, family history of spondyloarthritis, Crohn's disease, psoriasis, alternating buttock pain, and asymmetric peripheral arthritis. There's a positive response to NSAIDs. And you can also have elevated levels of the acute-phase reactants, mainly, sed rate and CRP. So in the patients that possess some of these spondyloarthritis features, HLA-B27 positivity further increases the probability of axSpA to 80%, 90%.

Dr Jeff Stark (12:21)
Awesome. This allows us really to have, I think, a fairly high degree of confidence in a diagnosis once a patient begins to exhibit some of these clinical features. 

As I think back again to the patient case that you shared, I remember that one of the final elements that made that diagnosis for that patient was imaging evidence of sacroiliac inflammation. And although as rheumatologists, we love to have that objective evidence that really allows us to feel confident in our diagnosis.

I wonder if you could give us a sense of the role that imaging actually plays in the diagnosis of a patient with non-radiographic axSpA.

Dr Anthony Turkiewicz (12:58)
When combined with a clinical suspicion of axSpA, imaging can help distinguish patients with ankylosing spondylitis from those with non-radiographic axSpA. So as you know, patients with ankylosing spondylitis, they have definite evidence of sacroiliitis visible by plain radiograph. But it's important to note that patients with non-radiographic axSpA may have inflammation actively visible by an MRI.

Dr Jeff Stark (13:25)
So as important as that imaging evidence can be in cinching a diagnosis for this type of patient, are there still patients who can have negative imaging and still carry a diagnosis of non-radiographic axSpA?

Dr Anthony Turkiewicz (13:37)
And, Jeff, I think that's one of the key elements of this discussion would cause that-- while we like that objective measure, that MRI, active inflammation, there is a population of patients with non-radiographic axSpA who have negative MRIs. It's in those very cases where the clinical symptoms, which again include inflammatory back pain and other objective signs of inflammation such as an elevated CRP, that can help support the diagnosis of non-radiographic axSpA.

The Role of Other Specialties (14:06 – 16:24)

Dr Jeff Stark (14:06)
Dr. Turkiewicz, in our discussion today I think we've had some great highlights about what some of the barriers to diagnosis are for these patients and ways that we can evolve in order to help them overcome those barriers. 

But one of the things I think about is a closer collaboration between rheumatologists and various other specialists who may encounter these patients somewhere along their early journey. We've had the ability to look at this a little bit in the literature and have seen that the non-radiographic patient often times ends up in a variety of care settings prior to coming to the attention of a rheumatologist, and those include radiology, pain medicine, physical medicine and rehab, anesthesiology or pain medicine, neurology, orthopedic surgery. And I think even your patient that you described landed in some of those settings on her way to ultimately arriving in your clinic. 

But can you give us some thoughts about those other specialties and the degree to which perhaps they should be made aware of axial spondyloarthritis and the inflammatory back pain features that characterize it?

Dr Anthony Turkiewicz (15:14)
Absolutely, Jeff. And, again, a key part to educating the healthcare community. The example I'd provided I think she actually had been to pretty much every one of those and it's not uncommon. I think one thing to educate those specialists about, as well as primary care physician, is again, going back to the features of an inflammatory back pain and then pointing out some of those key spondyloarthritis features. And that really should trigger a referral to come see rheumatology. When you talk about inflammatory back pain, again that's that pain at night that improves upon waking up, gets better with exercise. HLA-B27 positivity, definitely a helpful part of the puzzle, not required, not essential, but definitely part of the puzzle. And those that do possess HLA-B27 positivity, elevated inflammatory markers such as seg rate or CRP, and again history of inflammatory manifestations including uveitis, Crohn's or psoriasis. All these features really should trigger a referral over to rheumatology.

Conclusions (16:24 – 17:57)

Dr Jeff Stark (16:24)
So, Dr. Turkiewicz, I'd like to thank you very much for joining this discussion today. I think we've had a really great conversation about the diagnosis of non-radiographic axSpA.

Dr Anthony Turkiewicz (16:33)
I appreciate the invitation, Jeff. Such an important discussion, hopefully enhancing and getting the word out on the diagnosis of non-radiographic axSpA. So, again, appreciate the invite.

Dr Jeff Stark (16:47)
Absolutely. I'd also like to thank our audience for joining us today, we're delighted that you've been able to join us for this great conversation as well. 

And as we wrap up our time, a couple of key points stand out in my mind from our conversation today. One of those is that the path to diagnosis of non-radiographic axSpA is, unfortunately, a complicated and protracted one for many patients. This is due to several diagnostic challenges that those patients experience along the way, including the absence of diagnostic criteria, as well as the absence of an ICD-10 code for this condition. 

However, we know that proper identification of inflammatory back pain, as well as clinical features of spondyloarthritis and objective signs of inflammation like laboratory tests and imaging findings, can help to inform the diagnosis and move patients past these barriers in their diagnostic journey. 

Once again I'd like to thank our listeners for joining us today, we hope that you have enjoyed this conversation and we hope that you will join us again for our next and final episode in this series of podcasts focused on non-radiographic axial spondyloarthritis.
 

Join Dr Jeffrey Stark and Dr Xenofon Baraliakos in our fifth episode, the second in a two-part discussion on the recognition and diagnosis of patients living with non-radiographic axial spondyloarthritis (nr-axSpA). During this episode, Dr Stark and Dr Baraliakos will discuss the use of imaging to help inform the diagnosis of patients with nr-axSpA. As part of this discussion, they’ll review the X-ray and MRI findings that are most suggestive of nr-axSpA and ankylosing spondylitis. Dr Baraliakos will also share some best practices (including key information to include when requesting an MRI) and potential pitfalls to avoid when using imaging to help support the diagnosis of nr-axSpA. We hope that this discussion helps improve the use and interpretation of imaging results for patients with suspected nr-axSpA.

Xenofon Baraliakos, MD, PhD, is Senior Consultant and Scientific Coordinator at the Rheumazentrum Ruhrgebiet in Herne, Germany, and Associate Professor of Internal Medicine and Rheumatology at the Ruhr-Universität Bochum, also in Germany. Dr Baraliakos’ research focuses on the spondyloarthritides, with a special emphasis on imaging outcomes. He is the current president of the Assessment of SpondyloArthritis international Society (ASAS), chair of the European League Against Rheumatism (EULAR) Standing Committee on Musculoskeletal Imaging, and a member of the EULAR Executive Committee. Dr Baraliakos has received multiple honors, including research awards from the European Workshop on Rheumatology Research, German Rheumatology Society, and Austrian Rheumatology Society; the EULAR Young Investigator Award; and the German patient’s AS Society Award.

Disclaimer (00:00 – 00:20)    

  • This is an educational program sponsored by UCB
  • The information contained within this podcast is for your educational purposes only and is not intended to be medical advice
  • The guest speakers have been compensated for the presentation of this educational information
  • Healthcare providers should exercise their professional judgment when treating their own patients

Introduction (00:24 – 02:33)    

Dr Jeff Stark (00:24)
Welcome and thank you for joining us today. I'd like to welcome you to the fifth and final episode in the Non-radiographic AxSpA Community of Care podcast series. The goal of our episode today is to focus on imaging, recognizing the role that imaging can play in a diagnosis of patients who have non-radiographic axial spondyloarthritis or nr-axSpA. My name is Dr. Jeff Stark. I'm the head of Immunology Medical Affairs at UCB. I'm delighted to welcome you to this episode today.

We have a great agenda that will focus on topics related to imaging, including recognizing the differences between X-ray and magnetic resonance imaging findings in patients with non-radiographic axSpA. We will also focus on the challenges in interpreting some of these imaging results, as well as the key features that are necessary in an appropriate order for patient imaging when screening for non-radiographic axSpA. I'm especially delighted today to be joined by someone who has real expertise in rheumatology and in caring for patients with non-radiographic axSpA, as well as particular expertise to share in the area of imaging of this disease state.

I'd like to welcome Dr. Xenofon Baraliakos and invite him to say a few words about himself.

Dr. Xenofon Baraliakos (01:40)
Yes. Thank you very much, Jeff. My name is Xenofon Baraliakos, as you just mentioned. I work in Germany in a large tertiary hospital seeing patients with axial spondyloarthritis. We do have as a team some data that have contributed to the diagnosis of axial spondyloarthritis by using imaging. Obviously, that's our biggest expertise, and what I think is also very important is that not only us but also the entire community nowadays focuses more on imaging, not only for diagnosing axSpA but also for excluding wrong diagnosis by either clarifying the reasons for having back pain similar to axSpA and also for avoiding over-treatment. So I'm really happy to take part in this discussion today, and thanks for the invitation.

X-ray and MRI Findings (02:33 – 07:10)    

Dr Jeff Stark (02:33)
Thank you, Dr. Baraliakos. I think that as we think about the non-radiographic axSpA patients, one of the things that stands out about this patient group is the complexity of diagnosing them and, I think because of that, sometimes the long journey that they have to diagnosis. And that complexity, I think, has to do with the fact that clinical features are important, such as the symptomatology that they have. Laboratory assays may be helpful and certainly pertinent to our discussion today. Imaging findings are important in diagnosis as well. Could you tell us a little bit about non-radiographic axSpA and how it fits into the broader family of spondyloarthritis diseases? And also maybe describe some of the imaging findings that may be seen in patients with non-radiographic axSpA.

Dr. Xenofon Baraliakos (03:23)
Imaging is part of the tools that we have for the diagnosis. And when we talk about diagnosis, we talk about the whole family of spondyloarthritides, and non-radiographic axSpA is a member of this family, together with ankylosing spondylitis. And MRI is one important tool for the imaging parts or for diagnosing spondyloarthritis simply because it shows very nicely the most important findings that we know that are characteristic with this disease, and this is inflammation. This means bone marrow edema. We know that bone marrow edema is the starting point of pathological lesions of spondyloarthritis. Obviously, also in terms of non-radiographic axial spondyloarthritis since the X-ray findings or the X-ray changes will not yet be visible in that part.

And next to inflammation, we also know that once this is becoming chronic, which means it's there for already longer times, that might also be what we call tissue metaplasia, which is being seen as either fatty lesions, fat metaplasia where inflammation has been before or erosions or even sclerosis. So altogether, these are the imaging findings we would expect to see on MRI. So for the non-radiographic axial spondyloarthritis, I would expect to see mainly inflammation, bone marrow edema, which is seen in specific areas, close to the joint and so on.

Dr Jeff Stark (04:49)
Great. That's very helpful. And are there ways that those MRI changes of inflammation can be quantified or measured?

Dr. Xenofon Baraliakos (04:56)
Yes. All of them can be quantified and measured. Speaking about inflammation, we have different scoring systems that have been published by different teams. We had published many years ago the score for inflammation AS Spinal MRI-A is called, for the spine where we do measure inflammation based on the extent of the signal in the spinal areas, in the brittle areas. There is also the score from North America, which is called the SPARCC.

It works similarly, having also additional items for the depth of the signal and the density. However, there the quantification works a little bit different. It doesn't count the extent of the signal but whether or not it's present. For the sacroiliac joints, we have the so-called Berlin score, which covers all the features that we know that are important. This means inflammation, fat lesions, erosions, sclerosis, and ankylosis. Similarly, we also have the SPARCC part for sacroiliac joints, which also covers inflammation. And there is also another score system called SSS triple S, which also covers fat and erosions and sclerosis and ankylosis.

I think the additional question that comes up is which score may be better. We have done this analysis years ago within an OMERACT initiative project, and we've seen that, in fact, whichever score you may be using, there's no big differences in terms of outcomes. This means, when it comes to the followup of the patients and looking at whether or not they see an efficacy, for example, by treatment, all scores that are available are appropriate. The two that I just mentioned, the AS Spinal MRI-A or Berlin score and the SPARCC are obviously the most well-fitted, and they're also the mostly used ones.

Dr Jeff Stark (06:40)
And I imagine these measures are important parts of clinical trials in this disease space.

Dr. Xenofon Baraliakos (06:45)
Yes. This is absolutely correct. We're using them for clinical trials, and we're using them to show whether or not treatments are working in a way that we reduce inflammation. For daily practice, we are not using this scores because they're also time-consuming. But for the clinical trials, yes, we need to quantify the lesions, and we need to see the course of the disease in the MRI. This is exactly where we're using this course.

Interpretation of MRI (07:10 – 12:21)    

Dr Jeff Stark (7:10)
So coming back to this concept of the complexity of diagnosis for patients with non-radiographic axSpA, I think we recognize that imaging can't stand alone as the sole diagnostic test, that other features are important. Yet, at the same time, we recognize that imaging does play an important role overall in diagnosis. Some of those features that we see on imaging that you've alluded to, Dr. Baraliakos, like bone marrow edema, for example, and the sacroiliac joint, can be helpful. But at the same time, I've seen some recent data - and would love your thoughts about it - on that feature not necessarily being unique to patients with non-radiographic axSpA. So for example, recent publications have highlighted that bone marrow edema has been seen in patients with non-specific back pain or even healthy individuals without back pain. I wonder if you could tell us a little bit your thoughts about the potential for false-positive results on magnetic resonance imaging.

Dr. Xenofon Baraliakos (08:08)
Yes. Well, all these findings that you already mentioned are, I would also call it, the problem or the challenging part of the interpretation of MRI, especially because we do know that this very sensitive tool may - due to its sensitivity - may be not so specific sometimes. So we do have issues when we interpret MRI images, especially when it comes to different experience. So there might be lack of agreement between the people who may see that.
 
And we also know now, from more than two or three studies that have been just published, that not only athletes - this means those individuals who are exposed to bone stress - but also healthy persons, they may also show -- I wouldn't call it now inflammation, but bone marrow edema. Which, again, comes and goes. The most recent data that were just published were from a large number of people below 45 years of age from the general population who never suffered from back pain, and there we found that 20% of them, so ever fifth, has bone marrow edema which might be misinterpreted as a spondyloarthritis positive.

Similarly for the spine, we found that about 50% of these individuals may have either inflammation or bone marrow edema and fatty lesions, and other groups from the Netherlands, from Belgium, and others have shown similar numbers. So these false-positive findings may be an issue. This is the challenging part of the MRI interpretation, and this is why we also always say that MRI is a tool, it's not the diagnosis. It has to be combined with the symptoms that the patients have, and then the interpretation has to come out by putting all pieces of the puzzle together.

Dr Jeff Stark (09:54)
Sure. So I hear in what you say that there are some important limitations of MRI that we need to be aware of, and in particular perhaps a lack of specificity when it comes to these changings. That's helpful for us to keep in mind. I know, however, that MRI remains an important part of the diagnostic workup for these patients. Are there certain features of bone marrow edema that would give you greater confidence in them as reflecting true disease or suggest that those changes are less likely to represent a false-positive imaging result?

Dr. Xenofon Baraliakos (10:28)
Yes, there are. And these have been also published by ASAS in an international collaboration with rheumatologists and radiologists. And these are especially findings that deal with the localization of these lesions. This means for the sacroiliac joint, we do know that both the inflammatory lesions and the structural lesions should rather be localized very close to the joint, to the sacroiliac joint. This means they should be very articulately located. They should have a distinct border to the remainder of the bone marrow. And they should not be just spread around, spread around in the, in the bone. So let's say, the more condensed area, or the more condensed lesion is the more spondyloarthritis-like, at least considered as such, and not so much the diffused lesion that may be seen even in, again, either healthy individuals or, for example, also elderly people.

For the spine, on the other hand, we do know that the lesions that are more spondyloarthritis-related should be located at the edges of the vertebral bodies, not so much in the endplate area. And together with that, we expect those findings - if we consider them SpA-like - to be associated with a more or less healthy intervertebral disk. This means the disk has to have a normal height, not be dehydrated or even have a prolapse or something else that is more of a degenerative finding. So overall, these are the areas or the lesion types or the lesion morphology we would be expecting, and this can be found mainly in the patients with spondyloarthritis and not so much in those without the disease.

Dr Jeff Stark (12:09)
Those are very practical points, I think, that you mentioned and great for us to be aware of as rheumatologists but perhaps equally if not more important for our radiology colleagues also to be aware of.

Key Features in an order for Patient Imaging (12:21 – 18:36)    

Dr Jeff Stark (12:21)
So Dr. Baraliakos, I'd like to come back to this concept of a close partnership between rheumatologists and radiologists. Because I think that's so key as we address this topic. When ordering an MRI, I think that there are many things that can be helpful for the rheumatology community to be aware of. Some of those are quite simple, of course, like communicating a suspected diagnosis or relevant aspects of the patient's medical history. But some of those other important things that we can communicate to our radiology colleagues are more technical in nature, such as requesting them to focus on certain parts of anatomy, like the sacroiliac joint, and use certain angling of the imaging to emphasize the importance of T1 windows or STIR sequences that really highlight inflammation, for example, in this disease state.

I frequently hear from the rheumatology community that there's some misunderstanding about the necessity of contrast and a belief that contrast is necessary to highlight inflammation when, in fact, that is not actually the case for magnetic resonance imaging in axSpA.

Some of the, I think, very practical things that we have the opportunity to address in these patients who frequently have significant back pain is how they can be positioned to maximize their safety and their comfort for a test that oftentimes may be quite lengthy for them. But all of these facets of ordering an MRI are not necessarily something that the rheumatology community is intimately familiar with. I wonder if you would take us through, from your viewpoint, what are those best practices in ordering an MRI and how do you communicate with your radiology colleagues to ensure that's the best experience for the patient as well as providing the best diagnostic results.

Dr. Xenofon Baraliakos (14:10)
Yes. This is a lot of information that we can indeed discuss with a radiologist. I will try to make it as simple and clinically related as possible. And what I would start with would be that I always prefer and also suggest and advise is to work with particular radiologists only, not because the others may not be good enough but because then those who you work with regularly, they also know your needs. And then you can also learn with each other, from each other. This means, have standard protocols that may be used when patients are being referred from the rheumatologist to the radiologist. Because we have to acknowledge that, of course, rheumatology's not the biggest discipline that they would be serving. So obviously, this is something that I would start with always.

We know that there are specific sequences that are preferred in rheumatology and especially when it comes to diagnosing spondyloarthritis or they're suspicious of non-radiographic or radiographic axSpA. Those sequences are the D1 sequence in combination with the STIR sequence. We want with this to capture both the structural damage and the inflammatory lesions respectively. This is why we have said that these are the standard sequences that we advise to do.

When it comes to the position of the patient, the goal is that there will be a use or difference of other technical aspects. That's for the radiologists to consider. However, I think, one thing that we can communicate with them upfront is how thick the slices should be. Because this might also influence the sensitivity and the specificity of the images. And there we have said that the international standard is three to four millimeters. This is the part that I would expect the rheumatologist to communicate with the radiologist.

Now for the other thing, for the other aspect that you mentioned, whether or not we would be using gadolinium or any kind of contrast agent, there's a clear no to this for using contrast agents. We do not need them. We know that bone marrow edema, this means osteitis, is similarly well-detected in the simple STIR images. So we do save time. We do save costs. And, of course, not using a contrast agent is less dangerous in order to avoid adverse events by using gadolinium.

Dr Jeff Stark (16:30)
That's really helpful to remember. So recognizing how important that communication is, one of the things that we've recently done as UCB is to make some educational material regarding this topic available. And so we prepared an axSpA clinical resource toolkit that, among other resources, has a section on MRI best practices and even a sample protocol of what a detailed MRI order for diagnosing axSpA might look like. Is there any other information, Dr. Baraliakos, that you would share or that radiologists should know when they're performing an MRI in patients suspected of having nr-axSpA?

Dr. Xenofon Baraliakos (17:12)
Well, first of all, I have to say that exactly these actions are extremely important. Because we do not only need to diagnose the patient but need to spread the message about what chronic or inflamatory back pain is. One thing that I believe is also important is to know whether or not we should be screening patients who are at their, right age - this means based on the cutoff that we have set below 45 years of age - when they come in for clarification of any kind of chronic back pain those patients who complain about chronic back pain, independent of whether or not this is inflammatory or non-inflammatory, and they're below 45 years of age -- most of the times, obviously, the imaging that will be performed on MRI will be the one of the lumbar spine. And there we suggest or advise to, together with the lumbar spine images, also do a very short image of the sacroiliac joints in the coronal view in order to also capture the sacroiliac joints there and see if there is any suspicion of inflammatory lesions. It might be patients who just don't have anything yet in their lumbar spine, but this screening method for sacroiliac joints is important where there might be things that can be captured. And then the radiologist and any other physician who has asked for the images can consult the rheumatologist in order to go on with the imaging procedures and maybe also diagnose or even exclude the diagnosis of spondyloarthritis.

Conclusion (18:36 – 20:08)

Dr Jeff Stark (18:36)
That's wonderful. Thank you for sharing your wisdom with us on that topic. So Dr. Baraliakos, it's hard to believe that our time is coming to an end. This has been a great discussion today. I think that we've really had the opportunity to cover some key points around the concept of imaging and non-radiographic axSpA, including things like the X-ray and MRI findings and how those may differ, some of the pros and cons with regards to MRI, and some of the watch-outs that we can have to guard against over-interpretation of MRI diagnostic findings, as well as - I think very helpfully and practically - some great information about how to maximize the efficiency and outcomes of our imaging through close collaboration with our radiology colleagues. I'd just like to thank you so much for joining today. This has been a fantastic discussion.

Dr. Xenofon Baraliakos (19:28)
Yes. Thank you very much also from my side. Thanks for all the questions. They were, I believe, extremely to-the-point. Thanks also for listening, to everyone who has listened. I hope that these kind of actions will indeed help to improve the discussions with radiologists and also improve our diagnoses in daily practice. So I'm really happy to see the further development in this area, imaging, clinical diagnosis, avoiding over-diagnosis, and - of course – right and early treatment.

Dr Jeff Stark (19:58)
Thanks again, Dr. Baraliakos.