Recently, CreakyJoints, the digital, international patient community for people with all forms of arthritis, announced a new peer-reviewed article published in ACR Open Rheumatology showing that three-fifths of people living with axial spondyloarthritis (axSpA) discussed treatment changes with their health provider team at their last visit because they felt their symptoms were not well controlled.

The study is among the first to quantify the perspectives of people living with axSpA regarding their treatment journey.

DocWire News spoke with Benjamin Nowell, PhD, Director, Patient-Centered Research, CreakyJoints and principal investigator of ArthritisPower about the findings.

DocWire News: Can you begin by giving us some background on yourself, as well as on Creaky Joints & ArthritisPower?

Dr. Benjamin Nowell: Absolutely. I’m the Director of Patient-Centered Research at the Global Healthy Living Foundation. GHLF is a patient advocacy organization located in New York, and our mission is to help patients help themselves. So we work across advocacy, patient education and support, and my area, which is research, to help patients get the tools that they need to get better access to care, and essentially to help themselves feel better and get better treatment. ArthritisPower is our research registry, and it’s also a symptom tracker and a smartphone app that creates and disseminates research evidence that matters to patients. So it’s really our mission to take on project that either help illuminate something that is going to help patients make better healthcare decisions, or that brings to the forefront, a patient voice or patient experience that’s maybe not currently reflected in the literature.

Creaky Joints is probably the most well-known program or brand of the organization, and Creaky Joints is an online community of patients with all forms of arthritis, rheumatic disease. We have a website, that’s what Creaky Joints is,, that has cutting edge information that’s updated all the time about new treatments, about things we’re learning about patient stories. So it’s a great platform for patients to learn things that they might find useful for themselves, but also to connect with others. ArthritisPower, as I’m mentioned, is our research registry and the smartphone app, so it’s a platform to collect data that’s used to better understand rheumatic conditions. It’s specifically for people who are residents of the United States right now, but it’s translated also into Spanish, and we are expanding to conduct research with ArthritisPower in other countries.

There’s a lot of overlap between ArthritisPower and Creaky Joints, and patients who are members of, or participants, in ArthritisPower, are also referred to some of the resources and articles that are relevant to them on the Creaky Joints website.

What are the challenges for patients living with axial spondyloarthritis (axSpA)?

Axial spondyloarthritis, or axSpA, it’s a chronic inflammatory disease that affects about 1% or 1.5% of adults in the US. And a lot of patients, because it’s not as well known and inflammatory arthritis as, for example, rheumatoid arthritis is, a lot of patients, unfortunately, have symptoms that they experience unnecessarily, or they there’s long term consequences of axSpA, especially if it’s not treated. There’s a number of reasons for this, but there’s barriers to treatment, and some of it, it just has to do with the lack of knowledge or understanding about axSpA diagnosis and treatments among both healthcare providers and patients themselves.

It’s often confusing for people, for patients themselves, to understand the difference between mechanical back pain versus inflammatory back pain, and so there’s often diagnostic delays. So patients may have the disease, but not know about it for years. We did a survey before this current study with Dr. Alexis Ogdie from U Penn. And in that study, we found that about 60% of patients received a diagnosis of ankylosing spondylitis 2 or more years after they first sought medical attention for their axSpA-related symptoms. And then even after being diagnosed, patients often lack the specialty care that they can get from a rheumatologist, and so they may not have access to the immunomodulatory treatments that they need to actually adequately treat their axSpA. So there’s just barriers in terms of lack of information, lack of access that a lot of patients are up against, and that’s unfortunate because there are now treatments available that can help them feel better now and also avoid some of the long-term consequences of the disease.

Talk to us about the study – why, and how it was conducted, and what were the findings?

Yeah. So in this study, it was a cross-sectional survey, and it was a study where we really wanted to understand what is the experience, from the patient’s perspective, of their decision making about axSpA treatment? And what are the kinds of decisions that they’re actually making? What are the decisions that they’re understanding when they go to their appointment with their doctor? And also, what is their satisfaction with their axSpA treatment?

We asked the members of ArthritisPower who were eligible to participate in a survey. A total of 274 participants participated in this survey. And the survey was built collaboratively, so it had the involvement of clinicians, of rheumatologists, of researchers, but also of patients, to help define what the questions were on the survey. There were also some standard instruments that we included in the survey, for example, the BASDAI, so that we had some measure of disease activity as well from the patient’s perspective that we included in the survey.

So, of those 274 participants, a majority were female, 87%, and the mean age was 50 years old. A lot of the participants, up to 80%, had actually researched axSpA treatment themselves before they even went to their doctor visit. And then during their most recent visit with their physician, 57% of them had actually discussed a treatment change during that visit. Of those treatment change discussions, most of them were related to treatment escalations, about 70%, deescalation was discussed in about less than 30% of cases, and switching of treatment was discussed in about 40% of cases. Among the participants who did discuss a change at their most recent visit, three-quarters of them actually agreed to the change, in most cases, because they felt like their axSpA was not being controlled or that it could be controlled better on a new treatment. The top symptoms that were prompting the change in treatment were related to back or buttock pain or other joint pain, and also fatigue in more than half of the participants in the study who did make that change.

Did the study have any limitations?

In addition to the patient treatment decision making in the study, we also asked questions about their satisfaction with their axSpA treatment, and almost one half of the participants expressed some dissatisfaction with their treatment. And unfortunately, less than two-thirds of those who were dissatisfied discussed a treatment change at their most recent visit. We did find, however, that among current biologic patients, so the participants in the survey who were currently on a biologic DMARD, they tended to be more satisfied than were the people who were not on a biologic. So, specifically, among the satisfied participants, biologic use was common among them. And so it was about 62% of the participants in the satisfied group, versus dissatisfied participants, there were only about 26-27% of the dissatisfied participants were on a biologic. So that bodes well, I think, for how satisfied people tend to be on a biologic. It’s not perfect, but it’s certainly better than those who are not.

Some of the limitations of the study are just simply the sampling frame and the fact that we’re using a specific way of reaching out to patients in a study like this. So these participants were already existing members of the ArthritisPower Registry, and they opted in to participate in this particular survey. We tend to have more women than men in the ArthritisPower Registry overall. I mentioned earlier that upwards of 80-something percent of the participants who participated in this study were women and that it’s a higher proportion of women than you would see in the general population among people who have axSpA. Some of that is simply a reality of who tends to participate more in research and particularly in online research, so it skews more or female.

The other thing that’s a potential limitation here is that we were not recruiting from clinical sites. So we didn’t have a physician confirmation of the participants’ diagnosis in this study, but patients did tell us that they had an axSpA diagnosis or an AS diagnosis that was given to them by a doctor. So in this case, this is all patient self-report, and so, in some ways, that’s a limitation.

Can you talk to us about the importance of patients playing a role in treatment decision making?

Absolutely. I think patients have a huge role in treatment decision making, because they’re the ones, actually, who are going to be consuming the treatment, whatever it is. And I think this study shows us that there’s a number, although most patients who were proposed a treatment change, they agreed to that change, there are still patients who need more time to think about it or who do not agree to the treatment change. And so, obviously, there’s some more work that needs to be done so the patients are understanding the reasons for treatment change, that patients understand what their options are, that patients are giving all the tools and support they need in order to get access to treatment.

At the same time, this study shows that satisfaction plays a role in this conversation as well. And so, even though patients are not uniformly satisfied with their treatment, they’re still not necessarily willing to make a change. So I think there’s a lot more that we need to understand about why and how patients are making decisions about their treatment and how that interacts with what they’re experiencing when they go to the clinical visit, what they’re hearing from their doctor, what they’re hearing from other people. And one of the things that we found in a related study in rheumatoid arthritis is that often patients really want to hear from each other. They want to hear from other people who’ve actually been on the medication, they want to hear from other people, like themselves, who experience the same condition.

And so I think the same could be set of also the axSpA population, that patients really need a place where they can hear from the experience of other patients and get a more real-world grounding in how to make these decisions and what things they should be thinking about. They need some affirmation for the concerns that they’re experiencing that comes, not just from the healthcare team, but also from other patients as well. And so that’s why I feel really strongly about the fact that more of this kind of research is necessary within a patient-centered environment with a registry like ArthritisPower. And also, I think it’s important for patients to be able to know about communities of other patients, like the Creaky Joints community as well, where they can get more information that’s up-to-date, that’s factual, that’s been vetted by clinical experts and research experts.

What are the clinical implications of the study findings?

Well, I think the main clinical implication of this study is that we really need to understand patient treatment decision making in order to improve patient experiences and outcomes. So the more that we understand about how patients are making decisions, what kinds of decisions they’re making, what matters to them, then the more that we can do to support improvements in their care and in improvements in their condition. Patients, really, the factors that matter to them, especially we ask these questions among patients who are treated with a biologic in the study, and the most important factors for treatment decisions for them were wanting to prevent long-term consequences of the disease. That was true among more than 90% of participants, and around 88% of participants on a biologic said that a very important factor, the most important factor, was their doctor’s advice.

So patients really listen to doctors and that makes a big difference for them. And I think the clinical implication is that we need to depend, of course, on the doctor’s advice, but also put other things in place, like hearing from other patients, getting more access to information about treatment options so that patients have all of the tools on their side to be able to make a treatment decision that they feel good about and is going to be the best for their long-term health.

Any closing thoughts?

We’re grateful to the participant. We have patient participants who always help us design studies like this, help us figure out what the best questions are, the best way to answer these questions, and we pilot test our surveys, and just to acknowledge and to express gratitude for the great part participation of the patients, especially Jen Walker, who is acknowledged in our manuscript on this, who helped with the study.