Background/Purpose: Many patients with RA do not achieve guideline-recommended treat-to-target (T2T) goals in clinical practice. There is a paucity of data regarding the challenges that patients face when attempting to achieve better control of their RA disease activity. In this study we sought to identify and prioritize patient-perceived barriers to achieving RA disease activity control.

Methods: Participants were recruited from the within the Consortium of Rheumatology Researchers of North America (Corrona) registry by email and invited to participate in 4 nominal groups. Each group generated a list of barriers that made it challenging for patients to control their RA disease activity. All generated items were combined in a single dataset and subjected to a card sort procedure to create common themes. A random sample of patients with RA enrolled in Corrona were invited by email to complete a compensated online survey and asked to rank their top 3 barriers. A weighted score was assigned for each barrier by considering the number of respondents who ranked it and the priority rank they assigned. The barriers were sorted into domains. The survey also included knowledge items about T2T strategy and attitudes about RA treatment.

Results: Four nominal groups with 37 RA patients identified 17 themes to achieving control of RA activity. We sent 1567 email invitations to complete the survey and 463 patients with RA responded within 3 weeks. Demographic and clinical data was available for 1331 persons, 383 of whom responded to the survey. There were no differences in age, sex, or disease duration between survey- respondents and non-respondents. A higher proportion of respondents were college-educated. A total of 289 (76%) respondents considered RA to be a high priority for their health, 193 (51%) reported being familiar with T2T as a treatment strategy, and 233 (75%) agreed that it is important to accept the risk of side effects now in order to improve the chance of being healthy in the future. Among the challenges to controlling RA disease activity, the domain that received the highest score was unpredictability of RA and its treatment, which comprised the following barriers: unpredictability of how RA may progress, medication risk aversion, effectiveness, and safety/tolerability concerns (Figure). Symptoms and illness burden domain received the second highest score, followed by the health system domain (Figure).

Conclusion: Important patient-perceived barriers to achieving RA disease control include unpredictability of how RA may progress, medication risk aversion, cost of RA care and RA physical limitations. Addressing these barriers, when possible, may improve goal-directed RA care.