W. Benjamin Nowell, PhD, and Kelly Gavigan, MPH, on Barriers to Optimizing Rheumatoid Arthritis Treatment, Achieving Patients' Goals

A new analysis1 of the ArthritisPower registry aimed to identify factors that patients believe influenced their physician’s treatment decisions. This is one of few studies that investigated patients’ own rheumatoid arthritis (RA) treatment goals.

To find out more about this analysis, Rheumatology Consultant reached out to the lead authors: W. Benjamin Nowell, PhD, who is the director of patient-centered research at CreakyJoints and principal investigator at ArthritisPower, and Kelly Gavigan, MPH, who is the manager of research and data science at CreakyJoints.

RHEUM CON: What do you think are the most important factors that patients with RA believed had influenced their physician’s treatment decisions?

Kelly Gavigan: Our ArthritisPower study did not ask participants if they understood the reason their rheumatologist did or, in the case of most participants, did not suggest treatment escalation or another change in treatment. Rather, we aimed to understand what prompted the patient to make a change. 

The most commonly reported reason patients gave for making a change was physician’s recommendation. We found that among participants who had high disease activity at baseline (n=175), only 66 (38%) participants were offered a treatment change by their rheumatologist at their most recent appointment. Of these, the majority (71%) accepted. Physician’s recommendation was a major reason given by participants for intensifying (42%) or scaling back (60%) treatment. Even when participants were offered a treatment change, some of them decided against it. 

The most common reason (66%) for deciding not to change treatment was the participant’s perception of their rheumatologist’s satisfaction with the current therapy. The main reason participants did not change their treatment was that their doctor said it was okay not to change (eg, they were doing “well enough”).

RHEUM CON: What are the patient barriers to treatment intensification? How can a rheumatologist approach this?

W. Benjamin Nowell: Our study also found that many participants with high disease activity (20%) did not feel that their goals matched their doctor’s, and within that same group, nearly a quarter said that they did not recall their rheumatologist discussing treatment goals with them. This finding, combined with the fact that less than 40% of participants with high disease activity were offered a treatment change, raises questions about what indications are needed for both the patient and the physician to initiate a conversation about adjusting treatment to reach goals. Clearly there is an immediate need to help rheumatologists and patients communicate better and dedicate time at each appointment to assess how well their current strategy is meeting treatment goals.

RHEUM CON: When participants were asked to self-rate their disease activity, most of those who rated their disease activity as low or moderate had high RAPID3 disease activity. How can this perception impact overall care? And how can a rheumatologist help their patients better understand their disease?

KG: We found that patients’ treatment decisions may be influenced by their perception of their disease activity. We found a higher level of agreement between participant’s self-assessed level of pain, fatigue, and sleep disturbance and the corresponding PROMIS measurement than was observed between self-assessment of disease activity with the RAPID3, a measure often administered in the doctor’s office.

Specifically, when asked to self-rate their disease activity, most participants who rated their disease activity as low or moderate had high RAPID3 disease activity (weighted kappa [95% CI]: 0.05 [− 0.01, 0.11]). By contrast, there was a moderate agreement between participants’ self-assessed levels of pain interference (weighted kappa [95% CI]: 0.44; [0.35, 0.52]), fatigue (weighted kappa [95% CI]: 0.36; [0.28, 0.44]), and sleep disturbance (weighted kappa [95% CI]: 0.25; [0.19, 0.31]) and the corresponding PROMIS measurement. 

To us, this suggests that the RAPID3 may not be as informative as symptom-specific measures when setting treatment goals from a patient’s perspective. We need to consider patients’ perspectives and how they prioritize and measure their experience of RA symptoms when identifying and tracking against treatment goals.

RHEUM CON: What are the clinical implications of the study? And what is most important for rheumatologists to know?

KG: If patients’ self-assessment of how they are doing differs substantially from their rheumatologist’s assessment, there is likely a disconnect between how each is thinking about disease progression and the impact of current treatment on functionality and quality of life. Therefore, rheumatologists may consider using PROMIS measures or other strategies to gain a more complete picture of a patient’s experience with the disease. Ultimately, a better understanding of patients’ perception of their disease activity and its impact on their life may improve how rheumatologists and patients work together to define and track treatment goals.

RHEUM CON: What are the next steps of your research?

WBN: CreakyJoints is working with Liana Fraenkel, MD, MPH, from Berkshire Medical Center and Yale School of Medicine on a study that aims to better understand patient decision making around treatment optimization. This collaborative study with ArthritisPower is, “Improving Treat-to-Target by Incorporating the Patient Perspective,” and is sponsored by the ACR-affiliated Rheumatology Research Foundation. With results in hand, Dr Fraenkel and her colleagues, with help from CreakyJoints, hope to develop a framework of communication strategies to address various patient perspectives about goalsetting and treatment.

Dr Nowell and Ms Gavigan have no relevant disclosures to report. This study was sponsored by UCB Pharmaceuticals.


  1. Gavigan K, Nowell WB, Serna MS, Stark JL, Yassine M, Curtis JR. Barriers to treatment optimization and achievement of patients' goals: perspectives from people living with rheumatoid arthritis enrolled in the ArthritisPower registry. Arthritis Res Ther. 2020;22(1):4.