Nr-axSpA: The Burden of Disease

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.