Betty Hsiao, MD, on Patient Conceptualization of RA Treatment

Dr Betty Hsiao, from the Yale New Haven Medical Center and a medical advisor to CreakyJoints, presented an abstract at EULAR 2022 on understanding heterogeneity in patients' conceptualization of treatment for rheumatoid arthritis. This study involved patients recruited from the ArthritisPower Research Registry. ​​​​She recently spoke with Rheumatology & Arthritis Learning Network about her earlier research and plans for future studies.

RALN: What was the objective of this study?

Dr. Hsiao:  In order to talk about this study, I think it's helpful to talk about the prior study we did, which is what this is based off of. In a previous study, we had developed a mental model identifying the ways in which patients with rheumatoid arthritis conceptualized their RA treatment, and how rheumatologists conceptualized treating RA. We wanted to identify ways in which the patients with RA differed from rheumatologist in terms of their thinking on this topic.

We found that patients discussed numerous additional factors that influenced their decision making beyond the known impact of RA, including the importance of feeling informed by their rheumatologist and by other patients facing similar challenges—especially on the significant trade-offs that they faced related to changing their medications.

The goal of this study was to quantify the importance of the factors that we found in the mental models, and to examine whether the patient's views and beliefs clustered into specific groups, and to further describe these clusters of patients in terms of their population characteristics.

RALN: Tell us a little bit more about those mental models and what you found.

Dr. Hsiao:  For the mental models, we had conducted semistructured interviews with both rheumatologists and patients to elicit their views regarding treatment decisions with RA, the focus on treat to target. Our paper describing the mental models was just published last week in ACR Open. What we found was that physicians described how treatment decisions should be based on different aspects, including the overall trajectory of disease, rather than just at the point of care. Physicians also describe the importance of adherence and the patient's response to previous medications, which affected the decision making. Physicians also recognize certain barriers that patients experienced—for instance, getting to the lab to get their labs drawn, transportation to and from the appointments, as well as limitations related to physician practice and insurance coverage. The physicians also talked about their own preferences and the possible influence of pharma that can also factor treatment decisions.

On the patient's mental model, what patients didn't really talk about as much was measuring disease activity, which is what rheumatologists really based a lot of their treatment decisions on. They had talked about the necessity of feeling adequately informed, including from sources outside of their rheumatologist, in order to make their treatment decisions. Patients also brought up the burden of making treatment decisions, as well as the uncertainty about whether taking a new medication would have a good effect on their RA, as well as the concern of new side effects from medications. Patients similarly brought up the concern of influenza of pharma on their rheumatologist recommendations.

RALN: You noted in your study that patients across these clusters that you identified had what you described “a ubiquitous discomfort” about adding and switching medications, despite their perception of the benefits associated with those therapies. How do you explain that? That seems to be a bit of a dichotomy.

Dr. Hsiao: We found that even though patients had endorsed medication or DMARDs as being critical component of their treatment for RA, they did have lower comfort levels when it actually came to adding or switching DMARDs, which can explain, or is consistent with, at least the lower than recommended rates of treat to target in clinical practice. For the rheumatologist, the decision is more straightforward. When patients have moderate to high disease activity, then we would normally recommend adding or switching or escalation of some sort of medication. But for patients, they perceive this decision as difficult because of the significant tradeoffs that are involved, including waiting for a new medication to work, the uncertainty of response to a medication, and the risk of new toxicities. These factors play a role in the patient decision making.

RALN: You identified 5 clusters of patients. Can you describe the key attributes or descriptors of those clusters, and how they differ from each other?

Dr. Hsiao: There were five clusters that had emerged, and this was based off of patient surveys that were administered to further describe the concepts that had emerged from the mental models. We had identified 5 clusters based on the surveys that we had administered to further identify the relative importance of the themes that had emerged from the mental models.

The largest group was labeled “successfully engaged” in care. This indicated a positive relationship with their rheumatologist, feeling well informed, and having active participation in care.

The next largest group was called “worried about medication.” Members of this group also had a high perceived favorable DMARD risk-benefit ratio, endorsing a favorable concept of DMARDs, but were less comfortable adding or switching medications, and also had less confidence in testing, reflecting their disease activity.

The next cluster we labeled “skeptical of testing.” These patients had a favorable view of DMARDs, but they had scored lower on access and quality of care and confidence in testing. So this highlights that this group of patients needs to have better access and quality of care before they can think about engaging in a treatment decision.

The fourth cluster of patients had expressed a lower value of DMARDs and also a lower score in terms of DMARD risk benefit and confidence in testing. We had called this group “resistant to DMARDs.”

And then, the smallest cluster scored the lowest on access to quality care and support. This indicates that this group had less access to and satisfaction with their overall care. They did have a favorable risk-benefit ratio for DMARDs, so they did also endorse DMARDs as being important. We labeled this group “dissatisfied with care,” as the main issue is with access.

So you can see that, although 4 of the 5 groups had a favorable DMARD risk-benefit ratio, none of the groups was really enthusiastic about adding or changing DMARDs. And the confidence overall in testing in RA pretty low.

RALN: How do you explain that low confidence in testing? Is it the difference between how the patient feels and what the physician says about what the tests are showing when they look at biomarkers and other measures of disease progression?

Dr Hsiao: I think the lack of confidence in testing can reflect the discordance between how testing may not reflect how they're feeling, like you said. And for our first paper, describing the mental models, patients had also brought up the concept of seropositivity, which relates to having certain biomarkers that are positive, having inflammation markers that are elevated when disease activity is high, or not having their tests reflect that. And we know that, for certain patients, their inflammatory markers may not be elevated. So the confidence in testing reflects that disconnect where testing doesn't reflect how they feel.

RALN: Did you find that patients might be reluctant to add or switch medication in part because what they have is working and they're feeling better than they were before treatment began, so they don't want to endanger that success?

Dr. Hsiao: That has actually been described in other studies, and can affect decision making and reluctance in switching medications. But what we found was more related to, I guess, endorsement of DMARDs and also the aspects of whether patients had access to high quality care.

RALN: One of the other points made in your study, was that interventions outside of the traditional physician-patient relationship are needed to facilitate treatment escalation in patients with RA. Again, when we're talking about facilitating treatment escalation, about trying to overcome that reluctance to change or add medication. What types of interventions do you think could be effective here?

Dr. Hsiao:  In this study, most of the clusters had endorsed a relatively favorable view on DMARDs, so these patients understand that DMARDs can be beneficial for RA. But still there's that gap where they may feel the DMARDs are favorable, but may be reluctant to escalate. Based on our previous study, where patients had described the importance of information from sources outside of their rheumatologist as part of the decision making, we have partnered with our patient research partners, and have developed patient testimonials in the form of videos with patients with RA, describing their experiences in making similar decisions, whether that is starting a new medication, switching a to new medication, how to partner with their rheumatologists, and similar topics. We hope to provide these videos as a resource for patients who are experiencing similar things as a way of providing reliable information. And we are currently investigating how to best implement these videos into clinical practice.

RALN: What does the practicing rheumatologist need to know about interventions to help improve adherence and to also encourage patients to be more open to making changes or switches or adding another drug when the rheumatologist thinks it's really necessary?

Dr. Hsiao: I think that despite the treat to target strategy, which has proven benefits and RA outcomes, hesitation in adding or switching is not uncommon. This is something rheumatologists experience. Learning how to partner with the patient and understanding that the conceptualization of how to approach treat to target is different among patients than clinicians, is an important step. Then you have to think about what were some of the gaps in care may be, and work with your patients in addressing these gaps—whether that could be a barrier at the system level of getting to the lab, or an insurance issue, work with the patient to overcome that barrier. If it’s an issue of needing information beyond what you're telling the patient in the office, provide resources so that patients can feel adequately informed to make that decision. I think these are strategies that go beyond what we may typically do in the average office visit.  

RALN: So are you seeing patients who really want to hear this from other patients. They want the direct input of people who've been through this and understand what they're going through?

Dr. Hsiao: Right. And patients had expressed the importance of hearing the same information from people who have experienced it themselves firsthand, other than their rheumatologist, or whatever pamphlet you're given in clinic.

RALN: What's next in your research?

Dr. Hsiao: Right now, we are interviewing key stakeholders— rheumatologists, pharmacists, office staff—and learning to understand how to best implement these patient narrative videos for our patients with RA, who may be hesitant in adding or switching DMARDs. And we hope to implement a study to look at whether these videos can influence treat to target.

RALN: We'll look forward to hearing about those results when you're ready to publicize them. Thanks for your time today.

Dr. Betty Hsiao: My pleasure.