Understanding Heterogeneity in Patients' Conceptualisation of Treatment for Rheumatoid Arthritis: A Cluster Analysis.

OBJECTIVE: Uptake of treat-to-target (TTT) strategies for rheumatoid arthritis (RA) management is low. Our objective was to understand the heterogeneity in patients' conceptualisation of RA treatment to inform interventions improving TTT uptake. DESIGN: Eligible participants recruited from an online research registry rated 56 items (on 5-point scales) reflecting concepts raised from patient interviews. Using items describing adhering to physician recommendations to create a binary criterion variable for medication adherence, we conducted a principal components analysis on the remaining items using Varimax rotation, describing how these factors predict adherence over and above demographic characteristics. We further use optimal sets in regression to identify the individual concepts that are most predictive of medication adherence. RESULTS: We found significant heterogeneity in patients' conceptualisation of RA treatment among 621 persons with RA. A scree plot revealed a four-factor solution explained 38.4% of the variance. The four factors expected to facilitate TTT uptake were (% variance explained): (1) Access to high quality care and support (11.3%); (2) low decisional conflict related to changing disease-modifying antirheumatic drugs (DMARDs) (10.1%); (3) endorsement of a favourable DMARD risk/benefit ratio (9.9%); and (4) confidence that testing reflects disease activity (7.2%). These factors account for 13.8% of the variance in full medication adherence, fully explaining the only significant demographic predictor, age of the patient. The individual items most predictive of poor adherence centre on the lack of effective patient-physician communication, specifically insufficient access to information from rheumatologists, along with the need to seek information elsewhere. CONCLUSION: Patients' conceptualisation of RA treatment varies; however, almost all patients have difficulty escalating DMARDs, even with access to quality information and an understanding of the benefits of TTT. Tailored interventions are needed to address patient hesitancy to escalate DMARDs.

Rheumatologist and Patient Mental Models for Treatment of Rheumatoid Arthritis Help Explain Low Treat-to-Target Rates.

OBJECTIVE: Despite proven benefits, less than half of patients with rheumatoid arthritis (RA) are treated using a treat-to-target (TTT) strategy. Our objective was to identify critical discrepancies between rheumatologist and patient mental models related to the treatment of RA to inform interventions designed to increase implementation of TTT. METHODS: We developed rheumatologist and patient mental models using the Mental Models Approach to Risk Communication. We conducted semistructured interviews to elicit views related to RA treatment decisions with 14 rheumatologists and 30 patients with RA. We also included responses (n = 284) to an open-ended question on a survey fielded to augment qualitative descriptions from the interviews. Interviews were transcribed and coded independently by two members of the research team. RESULTS: Rheumatologist and patient mental models for RA treatment are significantly more complex than the TTT model. Both consider domains (system factors and patient readiness) outside of disease activity measurement, target setting, and risk versus benefit assessment in their decision-making. Furthermore, specific factors were found to be unique to each model. For example, the physician model stresses the importance of evaluating disease activity over time and patient adherence. In contrast, patients discussed the impact of chronic disease weariness, medication-related fatigue, the importance of feeling adequately informed, and stress associated with changing medications. CONCLUSION: We found several discrepancies primarily related to information gaps and differences in how patients and physicians value trade-offs that can serve as specific targets to improve patient-physician communication and ultimately inform interventions to improve uptake of TTT.

OPEX: Development of a novel overall patient experience measure to facilitate interpretation of comparison effectiveness studies.

OBJECTIVES: A measure that encompasses both benefits and harms at the individual patient level may facilitate comparisons between treatment options and improve shared decision-making. The objective of this study was to develop a patient reported measure to capture overall experience (including both benefits and harms) of treatment using rheumatoid arthritis (RA) as a case example. METHODS: Hierarchies for treatment benefits are known. Therefore, we developed a hierarchy of adverse events (AEs) using a series of trajectory mapping and paired comparison surveys. We subsequently used these data to construct a paired comparison survey, asking patients to compare options including both a specified level of benefit and an AE. These data were used to generate a hierarchy of overall experience on treatment. RESULTS: 782 participants completed a series of three surveys. The trajectory mapping procedure and a paired comparison survey led to the generation of a hierarchy of AEs with nine levels ranging from No AEs to irreversible serious complications. In a third survey, in which AEs were paired with benefits, participants' ratings generated a 6-level hierarchy of overall experiences ranging from Major improvement + No, mild or manageable AEs (Level 1) to No improvement + Irreversible AEs (Level 6). CONCLUSIONS: Using a trajectory mapping approach, we developed a patient reported measure representing the distribution of patients' overall experiences on treatment. The intent of this measure is to enable patients and their physicians to compare the percentage of patients experiencing each level of outcome, from most to least desirable, across treatments.

Digital Interventions to Build a Patient Registry for Rheumatology Research.

This article aims to describe key issues, processes, and outcomes related to development of a patient registry for rheumatology research using a digital platform where patients track useful data about their condition for their own use while contributing to research. Digital interventions are effective to build a patient research registry for people with rheumatoid arthritis and other rheumatic and musculoskeletal diseases. ArthritisPower provides evidence of the value of digital interventions to build community support for research and to transform patient engagement and patient-generated data capture.

Preference Phenotypes in Support of Shared Decision-Making at Point-of-Care for Patients With Rheumatoid Arthritis: A Proof-of-Concept Study.

OBJECTIVE: In this proof-of-concept study, we sought to evaluate whether a value clarification tool enabling patients to view a set of rheumatoid arthritis (RA) treatment preference phenotypes could be used to support shared decision-making at the point-of-care. METHODS: We conducted a pretest/post test study. English-speaking patients with RA presenting to their scheduled outpatient visits were asked to participate. Visits for patients with active RA were transcribed. Shared decision-making components were measured using a quantitative coding scheme based on an established model of shared decision-making. RESULTS: Forty-six visits were included in the pretest and 40 in the post test phases. Providers offered more disease-modifying antirheumatic drugs (DMARDs) (2 or more) in the post test visits (60%) compared to the pretest visits (47.8%). Overall, more patients vocalized their values and/or preferences in the post test visits compared to the pretest visits for treatment escalation decisions including a choice of 1 new DMARD (90.9% versus 56.3%), 2 or more new DMARDs (95.8% versus 86.4%), as well as prednisone (87.5% versus 66.7%). Providers were also more likely to base their recommendations on patients' values and/or preferences in the post test (100% of 6 visits) than the pretest (64.3% of 14 visits) phases during visits in which a recommendation was made. The mean ± SD length of the visit was 29.9 ± 11.6 minutes and 25.1 ± 10.7 minutes in the pretest and post test phases, respectively. CONCLUSION: This study provides an early indication that a value clarification tool allowing patients to consider a set of preference phenotypes can support shared decision-making at the point-of-care without extending visit time.

Preference phenotypes to facilitate shared decision-making in rheumatoid arthritis.

OBJECTIVE: Implementing treat-to-target (TTT) strategies requires that patients with rheumatoid arthritis (RA) and their rheumatologists decide on how best to escalate care when indicated. The objective of this study was to develop preference phenotypes to facilitate shared decision-making at the point of care for patients failing methotrexate monotherapy. METHODS: We developed a conjoint analysis survey to measure the preferences of patient with RA for triple therapy, biologics and Janus kinase (JAK) inhibitors. The survey included seven attributes: administration, onset, bothersome side effects, serious infection, very rare side effects, amount of information and cost. Each choice set (n=12) included three hypothetical profiles. Preference phenotypes were identified by applying latent class analysis to the conjoint data. RESULTS: 1273 participants completed the survey. A five-group solution was chosen based on progressively lower values of the Akaike and Bayesian information criteria. Members of the largest group (group 3: 38.4%) were most strongly impacted by the cost of the medication. The next largest group (group 1: 25.8%) was most strongly influenced by the risk of bothersome side effects. Members of group 2 (11.2%) were also risk averse, but were most concerned with the risk of very rare side effects. Group 4 (6.6%) strongly preferred oral over parenteral medications. Members of group 5 (18.0%) were most strongly and equally influenced by onset of action and the risk of serious infections. CONCLUSIONS: Treatment preferences of patients with RA can be measured and represented by distinct phenotypes. Our results underscore the variability in patients' values and the importance of using a shared decision-making approach to implement TTT.

When Patients Write the Guidelines: Patient Panel Recommendations for the Treatment of Rheumatoid Arthritis.

OBJECTIVE: How best to involve patients in the development of clinical practice guideline (CPG) recommendations is not known. We sought to determine the feasibility and value of developing CPG recommendations based on a voting panel composed entirely of patients, with the ultimate goal of comparing the patients' recommendations to ones developed by a physician-dominated voting panel on the same clinical questions. METHODS: Ten patients with rheumatoid arthritis completed 8 hours of training on evidence-based medicine and guideline development. They constituted a voting panel and, with 2 American College of Rheumatology staff with expertise in CPG development and a physician facilitator, subsequently met at a face-to-face meeting to develop recommendations. They applied the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to formulate recommendations on 18 questions for which there was evidence warranting moderate or high confidence. RESULTS: The patient panel developed recommendations for 16 of the 18 questions; for the other 2, the panel thought there were insufficient data to support a recommendation. For 13 of the 16 questions, the patient panel recommended the same course of action as did the physician-dominated panel. Differences were due to how the 2 panels valued the balance between benefits and harms. CONCLUSION: Patient and physician-dominated panels developed the same recommendations for most questions for which there was evidence warranting moderate to high confidence. Additional experiences are necessary to advance the evidence necessary to determine what panel composition is optimal to produce the best guidelines.