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

Abstract

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.

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

“…Rheumatologists struggle less with whether a patient with moderate to high disease activity should add or switch DMARDs; for them the benefits greatly exceed potential risk, and best practices offer clear guidance. Some patients, on the other hand, perceive this decision as involving difficult trade-offs involving possible increased pain while waiting for a new medication to work, uncertainty of response to new medication and the potential risk of new toxicities 7…”

“…These findings resonate with the patient mental model interviews in which we learnt there are distinct patient phenotypes: those who feel they lack effective communication with their rheumatologists in receiving sufficient information so they seek out information on their own as well as patients who feel they receive relevant information from their rheumatologists but are still hesitant to escalate treatment, citing the need to also hear about other patients’ experiences with medications prior to making a decision. We learnt that these patients have a need for information from two distinct sources, both accurate and current medical advice from their rheumatologists as well as treatment experiences from their peers, which was viewed as a critical component in their decision-making process that could not be satisfied by their rheumatologists 7. This underscores the need for additional information and decision support beyond what rheumatologists typically provide during a clinic visit in order to increase TTT uptake.…”

“…We developed survey items to reflect the concepts that emerged in the patients’ mental model of RA treatment. Topics were identified by reviewing the content codes that were assigned during coding of interviews with patients 7. A subset of authors (JSD, BH, ML and LF) reviewed all assigned codes and quotations from participants associated with each topic, creating survey items that captured the core concepts.…”

“…Finally, an open-ended item gave participants an opportunity to share any thoughts that were not covered in the survey. Answers to this item were previously reported elsewhere 7…”

“…To effectively communicate the benefits and risks associated with TTT, interventions must reflect in-depth understanding of the complex influences on patient decision-making, such as culture, family, peers, media, social group, as well as cognitive and emotional factors. Using the Mental Models Approach to Risk Communication derived from decision science, we developed a mental model identifying ways in which patients’ conceptualisation of their treatment diverged from that of providers, based on in-depth qualitative interviews with patients with RA 7. Beyond the current and projected impact of RA on their function and quality of life, patients discussed numerous additional factors that influence their decision-making, including the impact of barriers (eg, insurance coverage, access to rheumatologists), the importance of feeling adequately informed by both their rheumatologists as well as other patients facing similar challenges and the significant trade-offs related to switching DMARDs.…”