Ask the Authors: Interview with Research Team Behind Study on RA Patient Treatment Goals

A recent DocWire News article highlighted a new study on factors that patients with rheumatoid arthritis (RA) think affect their provider’s treatment decisions. The study included RA patients aged 19 years or older who were enrolled in the ArthritisPower registry. Patients filled out the Patient-Reported Outcomes Measurement Information System-Computerized Adaptive Tests (PROMIS-CAT) for pain interference, fatigue, sleep disturbance, and physical function. Disease activity scores, ranked from zero to 30, were determined by the Routine Assessment of Patient Index Data 3 (RAPID3). All patients responded to an online questionnaire to assess barriers to treatment optimization, which included their own perception of their disease versus their RAPID3/PROMIS scores.

We recently interviewed W. Benjamin Nowell, PhD, director of Patient-Centered Research at CreakyJoints and ArthritisPower principal investigator, and lead study author Kelly Gavigan, MPH, manager, Research and Data Science at CreakyJoints, to discuss the findings of the study.

Q: What prompted you to undertake this study?

Dr. Nowell: Guidelines from the American College of Rheumatology (ACR) strongly recommend that RA be managed using a treat-to-target strategy. At CreakyJoints, we emphasize that people living with arthritis should be empowered to understand and set those treatment targets with their doctor with reference to their own goals and preferences, particularly those related to improving symptoms, functionality, and quality of life. We conducted this study to better understand when and why RA patients made decisions about changing their treatment.

Overall, the ArthritisPower study results point to an ongoing need to encourage and empower patients to talk to their doctors about how to set and achieve treatment goals that are meaningful to them. Further, rheumatologists may need to consider how to better assess their patients’ experiences and symptoms longitudinally to inform the treatment strategy.

Q: What are the key takeaways from the study?

Ms. Gavigan: We found that even when patients reported high disease activity, they weren’t always offered a change, including starting or stopping a medication, or adjusting the dose, to meet treatment goals or address symptoms. Specifically, among participants who had high disease activity at baseline (70%) according to the RAPID3, only 38% reported that they were offered a treatment change by their rheumatologist at their most recent appointment:

  • Of those patients with high disease activity who were offered a change in treatment, 71% accepted the change. Physician recommendation was a major reason given by all participants for intensifying (42%) or scaling back treatment (60%), regardless of disease activity.
  • Some participants declined a treatment change. The most common reason (66%) for choosing not to change treatment was that their doctor said it was okay not to change (e.g. they were doing “well enough”).

The study also found that many participants with high disease activity (20%) didn’t feel that their goals matched their doctor’s goals, and within that same group, nearly a quarter said that their rheumatologist had not discussed treatment goals with them. We believe there is an urgent need to improve the communication between rheumatologists and their patients to enhance implementation of a treat-to-target approach.

Q: Did any of the study’s findings surprise you?

Dr. Nowell: We were surprised that so few patients, less than 40%, were offered a treatment change when RAPID3 or PROMIS measures developed by the National Institutes of Health suggested that the majority (70%) of patients surveyed were experiencing high disease activity. It raises questions regarding what signals both physicians and patients ought to heed in order to initiate an important conversation about altering treatment to reach goals.

Interestingly, we also found that when asked to self-rate their disease activity, most participants who said that their disease activity was low or moderate actually scored as having high disease activity according to the RAPID3, a brief questionnaire often given to patients during a rheumatology appointment. On the other hand, PROMIS measures of Pain Interference, Fatigue, and Sleep Disturbance yielded close agreement between participants’ self-assessment of the corresponding symptom. 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. Rheumatologists may want to consider administering PROMIS measures as they have the potential to paint a more accurate and meaningful (to the patient) picture of a patient’s disease experience.

Q: What limitations did the study have?

Ms. Gavigan: Among the limitations of this ArthritisPower study was that the cross-sectional survey required participants to recall whether they were offered a recent treatment change, which could be subject to recall bias. To minimize this potential problem, participants were only asked to recall their most recent physician visit. In addition, disease activity was measured only by RAPID3 and not by rheumatologist-derived measures such as Clinical Disease Activity Index or Disease Activity Score 28. Thus, the rheumatologist’s decision not to offer a treatment change may have been appropriate and in line with current treat to target guidelines.

We believe that our study supports the notion that choice of measures collected by rheumatologists should be somewhat personalized to ensure that patient’s goals and expectations are considered when assessing the need for treatment changes. Furthermore, patients with long-standing RA can have complex comorbidities, requiring the prescription of additional medications, which may have influenced the physician’s treatment decisions as well.

Q: Do you have any future research plans pertaining to this area?

Dr. Nowell: Understanding patient decision making and how best to facilitate treatment optimization is an issue of critical concern for research staff and for the patient partners in our network. We are committed to continuing to contribute to research in this area. CreakyJoints’s ArthritisPower registry recently began work on a project titled, “Improving Treat-to-Target by Incorporating the Patient Perspective,” led by Liana Fraenkel, MD, MPH, of Berkshire Medical Center and Yale School of Medicine. The study, sponsored by the ACR-affiliated Rheumatology Research Foundation, seeks to better understand the range of RA patient perspectives regarding treat-to-target. Ultimately, the project aims to develop a framework of communication strategies that match the various, distinct patient positions on treat-to-target.

Dr. Nowell and Ms. Gavigan do not have any relevant disclosures to report related to this study. The study was funded by UCB Pharmaceuticals. The manuscript, “Barriers to treatment optimization and achievement of patients’ goals: perspectives from people living with rheumatoid arthritis enrolled in the ArthritisPower registry,” is available in Arthritis Research & Therapy