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Jessica Walsh, MD, explains the importance of understanding treatment satisfaction and decision-making in patients with axial spondyloarthritis based on patient-reported outcomes.
Jessica Walsh, MD, explores the findings of her study titled “Treatment Satisfaction and Decision-making from the Patient Perspective in Axial Spondyloarthritis: Real-World Data from a Descriptive Cross-sectional Survey Study from the ArthritisPower Registry.” Walsh is a medical advisor for CreakyJoints and is affiliated with the University Utah School of Medicine and George E. Wahlen Veteran Affairs Medical Center.
Rheumatology Network: Why was it important to your team to look at the patient-reported satisfaction of their treatment plans?
Jessica Walsh, MD: The there are several reasons. Patients do a very good job of communicating preferences with treatments but, oftentimes, there may be a little bit of a disconnect between providers and patients in terms of how well things are working. Providers may think about treatment and treatment success a little bit differently than patients. And so, our goal here was to look a little bit more deeply into how well treatments are working for patients, not only in terms of some of the more clinical assessments we typically use in our patient care, but also how the patients perceive it. What do we need to be doing to better understand how patients are experiencing their treatments and how should we communicate with patients about their experiences with treatments?
RN: What are some of the unmet treatment needs for patients with axial spondyloarthritis?
JW: In the past 15 years or so, we've made a lot of progress as a scientific and patient community towards improving treatments. But there's still a relatively large proportion of patients who don't respond well enough to treatments. And also there are issues with how they're administered. A lot of the treatments that work are administered by needles or injections and that doesn't always sit well with patients. Then there’s options: we've improved the number and types of medications available, but there still isn't as much as we'd like. Patients need to have more say and more alternatives for the types of treatments they start with. And also, just for subsequent treatments. If for whatever reason their initial treatment doesn't work well enough, or they don't tolerate it, or they otherwise don't like it, we need more options.
RN: Can you tell me a bit more about the study design?
JW: This is a CreakyJoints ArthritisPower study, and it's a survey study. People are recruited to the study, electronically primarily, and asked to answer questions about their health and their disease and their experiences with spondylitis and spondyloarthritis. So, for this study, these patients were self-identified as having spondyloarthritis. They also reported lots of different aspects of their disease and even some about their providers and who they were diagnosed by. And then we asked them all sorts of questions: Are you are you satisfied with your with your treatment when you went to your last visit? Did you discuss your treatment? If so, what happened with that discussion? Were you satisfied with the discussion? Did the discussion lead to treatment changes? Did those treatment changes occur during the visit or was additional time needed? Lots of different aspects of that, but it's a survey-based study design.
RN: What were the key findings of the study?
JW: Well, interestingly, we learned that most patients were satisfied with their treatment. And most people were actually talking about treatments and treatment changes during the visit. I think about 57% of patients, during their most recent visit, talked about a treatment change. Not everybody made the treatment change, obviously, but it was getting discussed. The flip side of that is 43% of patients didn't even discuss that at their visit. Interestingly, a lot of patients did research treatments before they went to their visit and had some prior knowledge of what options there might be for treatment changes. And then patients oftentimes take time after their visit to consider or think about research and talk about potential options with their treatment changes. There's a lot going on before and after visits with providers regarding potential treatments and methods of changing or improving treatment measurements.
RN: Does your team plan on doing any further research on this topic?
JW: Yes. I think there are a lot of places to go with this. We have been looking at some other aspects of treatment and patients’ experiences with treatments. One of the things we're currently working on publishing are some data about wear off. So, what happens between doses with treatments. A lot of the treatment options are administered once a week or once every 2 weeks. Are they getting dosed frequently enough? Or do they feel like their doses are wearing off? What does that do? How does that affect their satisfaction? We'd also like to learn a little bit more about how discussions should and could be initiated during busy clinic visits. And what are patient's preferences with how to start those discussions? What do they want providers to do during one of his clinic visits regarding addressing treatment satisfaction?
RN: Is there anything else that you would like our audience to know?
JW: There are big needs for the scientific community and the patient community to come together a little bit more to make sure we're all understanding what's going on. Most of the research that occurs with medications is assessed with specific outcomes that providers are able to see, like what your joints look like and what your pain scores are, things like that. I think sometimes there's not enough emphasis on the patient's interpretation and communication of what their experience is. So, keep talking about what's happening. Make sure to let your provider know when you're not satisfied with the treatment or even when you are satisfied with the treatment. Don't necessarily assume that your provider understands your experience without you being fairly explicit.