Patient-Reported Outcomes: Unmet Needs, Dissatisfaction With Current Treatment in Rheumatoid Arthritis

Dr Jeffrey Curtis discusses the web-based survey that identified unmet needs perceived by patients with rheumatoid arthritis.

There are significant unmet needs among patients with rheumatoid arthritis (RA), a majority of whom are not satisfied with their current treatment, including biologic disease-modifying antirheumatic drugs (DMARDs), according to survey results published in Rheumatology and Therapy.1

Rheumatology Advisor spoke with Jeffrey Curtis, MD, MS, MPH, Marguerite Jones Harbert-Gene Ball Endowed Professor of Medicine, UAB Division of Clinical Immunology & Rheumatology, and co-principal investigator at ArthritisPower®.

Rheumatology Advisor: According to the study, 74% of patients with RA reported dissatisfaction with their treatment plans, and that their disease symptoms persisted despite active treatment with DMARDs. How can this be addressed from a clinical perspective?

Dr Jeffrey Curtis: It is likely that [patients with RA] are doing better than they were before getting treatment, but that doesn’t necessarily mean that they are doing well. In some cases, patients’ short- and long-term goals may not be the same as their physician’s goals; for eg, clinicians may want to address issues related to pain, but patients may be far more bothered by fatigue, depression, and difficulty sleeping, which may, in fact, have a bigger effect on their pain. While rheumatologists may be most comfortable addressing joint symptoms, there are other issues that may have a larger effect on patients’ personal goals and treatment satisfaction, and that should be the priority to [discuss between doctor and patient].

I think clinicians can do a better job [of patient care] by inviting patients to set the agenda for the discussion during appointments. We can ask questions such as, “What are the symptoms and health-related factors that most limit your quality of life?” If we can better understand what our patients are most limited by and what might have the biggest effect on their health and quality of life, we can together develop shared decision-making strategies that can help in making more holistic choices, both in the short- and long-term.

Rheumatology Advisor: About half of the surveyed population with RA reported mental illness as one of the most common comorbid conditions. Is there a correlation between RA and mental health? How can rheumatologists better screen such patients?

Dr Curtis: It is very common for patients with chronic illnesses, including rheumatic diseases, to experience mental health issues, such as depression and anxiety. There are many studies that have demonstrated that depression and anxiety are common in patients with RA and they are linked to physical function and other symptoms, like pain, which affects quality of life. Screening for such symptoms is exceedingly important.2 A variety of short screening questionnaires3 are available that can be deployed in rheumatology clinics to screen for depression and other issues, and these take less than 1 minute to fill out.

Rheumatology Advisor: What can clinicians do to improve the “disconnect between patient and physician’s perceptions” of the disease, as stated in the recent study?

Dr Curtis: Often, we see our patients when they not feeling well or when they’re having a flare, which may divert the conversation from long-term considerations. During these appointments, I encourage patients to elicit their own health-related goals. I try to ask questions like, “What are the 1 or 2 things that we could address this visit that would make your life better?” to elicit robust reporting of their experience of not only RA, but also other related health considerations.

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As physicians, we also need to understand that patients may be hesitant to make changes because they already know what to expect from their current treatment. For eg, I might recommend patients to change their treatment, but they may not want to make that change because of fear of rare side effects. When choosing between the ‘devil you know’ (maintaining the current treatment and the current disease activity level, without any changes) or the ‘devil you don’t’ (a change), patients may not want to take risks to try something new. Physicians need to understand these issues and frame risks and benefits of treatment change in a fashion that are most relevant to patients’ specifics goals and concerns to promote shared decision-making.

In addition, clinicians need to foster an environment where it is safe to speak and for patients to be comfortable to bring up any issues. Indeed, patients who are typically passive with treatment wait for doctors to raise issues and prompt the discussion regarding treatment change. It’s relatively uncommon for some patients to ask for a change to treatment if the doctor doesn’t bring it up, even if patients do not feel like they are doing very well. If physician and patient goals aren’t aligned, opportunities to make much-needed treatment changes may never occur.

Rheumatology Advisor: Are there any follow-up interventions based on the results of your study?

Dr Curtis: We’re working to connect longitudinal patient-reported outcomes tools, like the ArthritisPower® Research Registry, to electronic health record systems so that physicians and patients have a more robust, data-driven picture of the 360-degree view of the experience of symptoms and treatment. We also need to find ways to incentivize both patients and physicians to regularly use these tools to encourage shared decision-making.


1. Radawski C, Genovese MC, Hauber B, et al. Patient perceptions of unmet medical need In rheumatoid arthritis: a cross-sectional survey in the USA. Rheumatol Ther. 2019;6:461-471.

2. ElSherbiny DA, Saad WE. Depression in rheumatoid arthritis patients: Screening for a frequent yet underestimated comorbidity [published online July 12, 2019]. Egypt Rheumatol. doi:10.1016/j.ejr.2019.07.002

3. Perez-Garcia LF, Rivera V, Moreno Ramirez M, et al. Screening for depression and anxiety in an outpatient rheumatology clinic using validated self-applied questionnaires. Arthritis Rheumatol. 2016;68 (suppl 10). Abstract 1173.