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Background Rheumatoid arthritis (RA) impacts quality of life causing disability and increased mortality. Treatment decisions are complex and require individualization. Shared decision making (SDM) is the first principle of RA treat-to-target guidelines, but uptake is suboptimal. We aim to evaluate the effectiveness of a multicomponent SDM intervention on RA disease activity and explore the early implementation of the intervention within three geographically diverse rheumatology services. Methods The RAiSeD trial uses a stepped-wedge, cluster-randomized trial design at three U.S. Veterans Health Administration rheumatology clinics, targeted to enroll more than 400 patients and over 45 clinicians. The multicomponent SDM intervention consists of three parts: (1) rheumatology clinician training and a pocket card on SDM and fostering choice awareness (“acknowledging when there is more than one sensible option available to address a patient’s situation”), (2) RA patient activation using the AskShareKnow questions, and (3) a point-of-care decision aid (RA Choice) and medication summary guide. We will conduct a mixed-methods outcomes and process evaluation. Outcomes will be evaluated during a pre-intervention (usual care) and intervention period. The primary outcome is disease activity as measured by the validated Clinical Disease Activity Index (CDAI), with secondary outcomes of RA knowledge and medication adherence. SDM will be measured by two brief, validated patient-reported measures. A subgroup of clinic visits will be audio-recorded and clinicians’ efforts to involve patients in SDM will be assessed. The implementation process will be evaluated using stakeholder interviews and field notes at each of the three sites. Discussion This study is the first multi-site trial of a multicomponent intervention to facilitate SDM among veterans with RA. We expect to improve uptake of SDM across geographically distinct rheumatology clinics and hypothesize that patients exposed to the interventions will have a greater decrease in disease activity and an increase in knowledge of RA medications compared to usual care. Insights gained from this study will inform broader dissemination and implementation of SDM across VA rheumatology clinics and beyond, with the goal of improving quality of care for all persons with RA. Trial registration ClinicalTrials.gov NCT05530694. Registered on September 7, 2022.

Significant advances in the treatment of rheumatoid arthritis (RA) have been made over the past 10 years with the introduction of biologic therapies, such as the TNF inhibitors. With these medications, many patients with RA have seen significant improvement in symptoms, function, and quality of life. However, with the introduction of the biologics, decision-making for this chronic disease that affects up to 1% of the population has become even more complex. Patient preferences for mode and frequency of administration, and for certain risks vs benefits as well as medication beliefs are central to uptake and adherence to these medications. This review examines the current literature on patient satisfaction, adherence, and preference for biologic therapy in RA.

Background Poor patient‐clinician communication around patient‐reported outcomes (PROs) is a barrier to the effective management of rheumatoid arthritis (RA). We aimed to develop an RA ‘dashboard’ that could facilitate conversations about PROs and that would be acceptable to a wide range of patients, including English and Spanish speakers and patients with adequate or limited health literacy. Methods A diverse group of RA patients along with clinicians from two academic rheumatology clinics joined separate focus groups. We solicited feedback and made iterative changes to mock‐ups of an RA dashboard that visualized PROs using a human‐centred design process. We used the thematic analysis method to identify and characterize themes from the focus groups and used these insights to refine the dashboard. Results We conducted six focus groups involving 25 RA patients and three groups with 11 clinicians. Patients and clinicians agreed that the dashboard could enhance communication about PROs and RA disease activity and could promote patient self‐management. Patients varied in their (a) comprehension, (b) preferences for the display and features of the dashboard, and (c) desired uses for the dashboard. Clinicians expressed significant concerns about the logistics of using the dashboard in clinical practice. Conclusion Using principles of human‐centred design, we created an RA dashboard that was well‐accepted among patients and clinicians. The ability to customize the data display is important for tailoring the dashboard to patients with diverse needs and preferences. Special attention should be given to feasibility concerns voiced by clinicians.

Objective Racial and ethnic disparities in rheumatoid arthritis (RA) disease activity measures have been documented. We compared racial and ethnic differences in disease activity using multiple composite measures, including an objective measure, the multi‐biochemical disease activity (MBDA) score. Methods Data are derived from the University of California, San Francisco RA Cohort, a longitudinal observational cohort. Participants with at least one MBDA measure and self‐reported race and ethnicity were included. Multivariable linear regression evaluated the association between race and ethnicity groups and mean MBDA score, adjusting for potential confounders, including symptom duration and medication use. Sensitivity analyses substituted the Clinical Disease Activity Index (CDAI) and the Disease Activity Score‐28 joints with erythrocyte sedimentation rate (DAS28‐ESR) for the MBDA in multivariable models. Results We included 267 participants (86% female, mean age 52.7 ± 13.3 years). The majority were Latinx (n = 137; 51%), followed by Asian (n = 91; 34%). After adjustment, Latinx participants had the highest mean MBDA score (40.6 ± 2.1) compared with White participants at (32.8 ± 6.7). Black participants had the second highest mean MBDA score, followed by Asian participants (36.3 ± 5.3, 36.0 ± 2.7, respectively), although neither were significantly different from White participants. The trends observed for the CDAI and DAS28‐ESR were similar to those for the MBDA. Conclusion We found significantly higher disease activity measured by the MBDA and DAS28‐ESR in Latinx participants compared with White participants. We also found significantly higher disease activity in Asian participants compared with White participants with the DAS28‐ESR. Our findings, although limited by the small number of White participants in the referent group, suggest that RA disease activity measures may be influenced by external factors that have differential impacts by racial and ethnic group.

Objective Patient‐reported outcomes (PROs) are an integral part of treat‐to‐target approaches in managing rheumatoid arthritis (RA). In clinical practice, however, routine collection, documentation, and discussion of PROs with patients are highly variable. The RISE LC (Rheumatology Informatics System for Effectiveness Learning Collaborative) was established to develop and share best practices in PRO collection and use across adult rheumatology practices in the United States Methods The goals of the RISE LC were developed through site surveys and in‐person meetings. Participants completed a baseline survey on PRO collection and use in their practices. RISE LC learning sessions focused on improving communication around PROs with patients and enhancing shared decision‐making in treatment plans. During the coronavirus disease 2019 (COVID‐19) pandemic, the RISE LC pivoted to adapt PRO tools for telehealth. Results At baseline, all responding sites (n = 15) had established workflows for collecting PROs. Most sites used paper forms alone. PRO documentation in electronic health records was variable, with only half of the sites using structured data fields. To standardize and improve the use of PROs, participants iteratively developed a Clinical Disease Activity Index–based RA Disease Activity Communication Tool to solicit treatment goals and improve shared decision‐making across sites. The COVID‐19 pandemic necessitated developing a tool to gauge PROs via telehealth. Conclusion The RISE LC is a continuous, structured method for implementing strategies to improve PRO collection and use in rheumatological care, initially adapting from the Learning Collaborative model and extending to include features of a learning network. Future directions include measuring the impact of standardized PRO collection and discussion on shared decision‐making and RA outcomes.

Despite the evolving evidence in favor of shared decision making (SDM) and of decades-long calls for its adoption, SDM remains uncommon in routine care. Reflecting on this lack of progress, we sought to reimagine the future of SDM and the path to take us there. In late 2017, a multidisciplinary and international group of six researchers were challenged by a senior SDM scholar to envision the future and, based on a provocatively critical view of the present, to write letters to themselves from the year 2028. Letters were exchanged and discussed electronically. The group then met in person to discuss the letters. Since the letters painted a dystopian picture, they triggered questions about the nature of SDM, who should benefit from SDM, how to measure its contribution to care, and what new ways can be invented to design and test interventions to implement SDM in routine care. Through contrasting the purposefully generated dystopias with an ideal future for SDM, we generated reflections on a research agenda for SDM. These reflections hinged on recognizing SDM’s contributing to care, that is, as a way to advance the problematic human situation of patients. These focused on three distinct yet complimentary contributors to SDM: 1) the process of making decisions, 2) humanistic communication, and 3) fit-to-care of the resulting decision. The group then concluded that to move SDM from envisioned to routine practice, and to ensure it reaches all, particularly persons rendered vulnerable by current forms of health care, a substantial investment in implementation research is necessary. Perhaps the discussion of these reflections can contribute to a path forward that will improve the likelihood of the future we dream for SDM.

Objective To examine the relationship of posttraumatic stress disorder (PTSD) with earlier treatment discontinuation and medication adherence in US veterans with rheumatoid arthritis (RA). Methods Veterans Affairs (VA) administrative data (2005‐2014) were used to define unique dispensing episodes of methotrexate (MTX) and tumor necrosis factor inhibitors (TNFi) for veterans with RA. Diagnosis codes were used to categorize patients into mutually exclusive groups: PTSD (with/without depression/anxiety), depression/anxiety without PTSD, and neither psychiatric diagnosis. Multivariable Cox proportional hazards models were used to evaluate associations between psychiatric diagnoses and time to disease‐modifying antirheumatic drug discontinuation (lapse in refill >90 days). Multivariable logistic regression was used to examine associations of diagnoses with medication nonadherence (proportion of days covered <0.8). Results There were 15 081 dispensing episodes of MTX and 8412 dispensing episodes of TNFi. PTSD was independently associated with a greater likelihood of earlier discontinuation of both MTX (hazard ratio [HR] 1.15 [1.10‐1.21]) and TNFi (HR 1.20 [1.13‐1.28]). Depression/anxiety had a comparable risk of discontinuation for both MTX (HR 1.14 [1.10‐1.19]) and TNFi (HR 1.16 [1.10‐1.22]). Depression/anxiety, but not PTSD, was associated with higher odds of MTX (odds ratio [OR] 1.12 [1.03‐1.22]) and TNFi (OR 1.14 [1.02‐1.27]) nonadherence. Conclusion Veterans with RA and comorbid PTSD, depression, or anxiety had poor persistence of MTX and TNFi therapies. These results suggest that earlier discontinuation and low adherence to therapy among patients with RA with these psychiatric comorbidities may contribute to worse disease outcomes. Mechanisms by which these comorbidities contribute to lower adherence deserve further investigation and may lead to targeted interventions to improve disease outcomes.

Treatment decision-making regarding immunosuppressive therapy is challenging for individuals with lupus. We assessed the effectiveness of a decision aid for immunosuppressive therapy in lupus nephritis. In a United States multicenter, open-label, randomized controlled trial (RCT), adult women with lupus nephritis, mostly from racial/ethnic minority backgrounds with low socioeconomic status (SES), seen in in- or outpatient settings, were randomized to an individualized, culturally tailored, computerized decision aid versus American College of Rheumatology (ACR) lupus pamphlet (1:1 ratio), using computer-generated randomization. We hypothesized that the co-primary outcomes of decisional conflict and informed choice regarding immunosuppressive medications would improve more in the decision aid group. Of 301 randomized women, 298 were analyzed; 47% were African-American, 26% Hispanic, and 15% white. Mean age (standard deviation [SD]) was 37 (12) years, 57% had annual income of <$40,000, and 36% had a high school education or less. Compared with the provision of the ACR lupus pamphlet (n = 147), participants randomized to the decision aid (n = 151) had (1) a clinically meaningful and statistically significant reduction in decisional conflict, 21.8 (standard error [SE], 2.5) versus 12.7 (SE, 2.0; p = 0.005) and (2) no difference in informed choice in the main analysis, 41% versus 31% (p = 0.08), but clinically meaningful and statistically significant difference in sensitivity analysis (net values for immunosuppressives positive [in favor] versus negative [against]), 50% versus 35% (p = 0.006). Unresolved decisional conflict was lower in the decision aid versus pamphlet groups, 22% versus 44% (p < 0.001). Significantly more patients in the decision aid versus pamphlet group rated information to be excellent for understanding lupus nephritis (49% versus 33%), risk factors (43% versus 27%), medication options (50% versus 33%; p ≤ 0.003 for all); and the ease of use of materials was higher in the decision aid versus pamphlet groups (51% versus 38%; p = 0.006). Key study limitations were the exclusion of men, short follow-up, and the lack of clinical outcomes, including medication adherence. An individualized decision aid was more effective than usual care in reducing decisional conflict for choice of immunosuppressive medications in women with lupus nephritis. Clinicaltrials.gov, NCT02319525.