Abstract
BackgroundFew studies have investigated patients’ own treatment goals in rheumatoid arthritis (RA). The objective of this real-world, cross-sectional study of US patients with RA was to identify factors that patients believed influenced their physician’s treatment decisions. Secondary objectives included reasons patients tolerated sub-optimal disease control and their perceived barriers to treatment optimization.MethodsEligible participants were enrolled in the ArthritisPower registry, ≥ 19 years, had physician-diagnosed RA, unchanged treatment within 3 months of baseline, prior/current disease-modifying antirheumatic drug treatment (DMARDs), and computer/smartphone access. In December 2017, participants completed Patient-Reported Outcomes Measurement Information System-Computerized Adaptive Tests (PROMIS-CAT) for pain interference, fatigue, sleep disturbance, and physical function. Routine Assessment of Patient Index Data 3 (RAPID3) provided disease activity scores (0–30). Participants completed an online survey on barriers to treatment optimization, including self-perception of disease compared to RAPID3/PROMIS scores.ResultsA total of 249 participants met inclusion criteria and completed the survey. Mean age (SD) was 52 (11) years, and the majority were female (92%) with high RAPID3 disease activity (175/249 [70%]; median score 18). The main reason participants did not change treatment was their physician’s recommendation (66%; n = 32). Of participants with high RAPID3 disease activity, 66 (38%) were offered a treatment change; 19 (29%) of whom declined the change. Most participants who intensified treatment did so because their symptoms had remained severe or worsened (51%; n = 33); only 16 (25%) participants intensified because they had not reached a specified treatment goal. Among participants who self-reported their disease activity as “none/low” or “medium” (n = 202; 81% of cohort), most still had RAPID3 high disease activity (137/202 [68%]; score > 12). Most PROMIS scores showed moderate agreement with participants’ self-assessment of health status, in contrast to RAPID3 (weighted kappa: 0.05 [95% CI − 0.01, 0.11]).ConclusionsMost participants trusted their rheumatologist’s treatment decisions and prioritized their physician’s treatment goals over their own. Patients should be encouraged to share their treatment goals/expectations with their rheumatologist, in line with the treat-to-target approach. RAPID3 may be inappropriate for setting patient-centric treatment goals given the poor agreement with self-reported disease activity; most PROMIS scores showed better alignment with patients’ own assessments.
Highlights
Few studies have investigated patients’ own treatment goals in rheumatoid arthritis (RA)
Participant disposition and baseline characteristics A total of 5541 patients were enrolled in the ArthritisPower RA registry, as of December 15, 2017 (Additional file 1: Table S2)
Baseline characteristics were similar between participants in high disease activity (n = 175, 70%; median Routine Assessment of Patient Index Data 3 (RAPID3) score [IQR]: 18 [15,16,17,18,19,20]) and those not in high disease activity (Table 1)
Summary
Few studies have investigated patients’ own treatment goals in rheumatoid arthritis (RA). After achieving low disease activity or remission, disease activity should be assessed every 6 months to confirm whether achievement of the treatment target was sustained and whether further therapy adjustments are required [1, 2]. This approach has been shown to improve short- and long-term clinical and radiographic outcomes in RA [3, 4]. There are limited research studies that attempt to understand treatment goals from the patients’ perspective, including barriers to meeting treatment targets and factors that lead patients to tolerate sub-optimal disease control. Emphasis is placed on understanding patients’ self-perception of disease improvement and disease-related limitations [8]
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