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Abstract and Introduction
Abstract
Objective We performed a qualitative study to better understand how patients with RA approach risk–benefit trade-offs inherent in the choice of remaining with their current treatment vs escalating care.
Methods We used a think-aloud protocol to examine how patients with RA approach risk–benefit trade-offs inherent in the choice of remaining with their current treatment vs adding a biologic. The data emerging from the protocols were used to develop a conceptual model describing how patients approach the decision to escalate care.
Results Participants who were strongly impacted by their disease were not open to considering alternative options. For some patients, being highly impacted by their disease results in a strong preference to escalate care. For others, the same level of distress is reason to unconditionally refuse additional medications. In contrast, those who were moderately impacted were more open to consider treatment options. Among these participants, however, subjects' risk–benefit trade-offs were consistently modified by factors unrelated to medication, including sociodemographic characteristics, role responsibilities and the quality of the patient–physician relationship.
Conclusion The conceptual model indicates that patients approach the decision to escalate care differently from physicians. In order to improve care in RA, it is important to recognize that many patients with moderate to high disease activity are not open to alternative treatments, which is a prerequisite to engaging in decision making. Routine clinical encounters should enable health care providers to identify these patients in order to tailor education prior to recommending treatment escalation.
Introduction
Optimal care for RA patients with moderate to high disease activity includes regular monitoring and adjustment of medication in order to improve both short- and long-term outcomes. Yet, recent studies have shown that treatment is frequently not adjusted in patients with active disease. This gap may be due, in part, to differences in how physicians and patients approach the decision to change or add medications.
Several papers have found that patients' illness perceptions and medication beliefs are distinct from physicians' explanatory models and that these beliefs predict adherence to prescribed medication. Physicians are expected to escalate care using criteria informed by the results of high-quality randomized controlled trials demonstrating that the benefits of escalating care using treat-to-target protocols far outweigh the risks. Patients' criteria to change treatment, however, differ from physicians' criteria in consistent ways. Notably, in a large cohort study of patients with RA, 71% of patients who had high levels of disease activity stated that they preferred to continue with their current regimen rather than change medication. In addition, a recent longitudinal study found that escalation of care in RA patients with high disease activity [as measured by the Routine Assessment of Patient Input Data 4 (RAPID4)] was likely to occur only in patients who also described being significantly physically and/or emotionally impacted by their disease. These findings indicate that patients' illness beliefs are an important determinant of treatment decisions that are not fully captured by the criteria used in treat-to-target protocols.
In order to decrease the gap between evidenced-based recommendations and decisions made in clinical practice, it is important to understand how patients evaluate the relationship between their disease and the need to change treatment. Our objective was to qualitatively examine patient responses as they evaluated the risks and benefits inherent in the choice of remaining with their current treatment vs adding a biologic. We captured the patient perspective using a think-aloud protocol, which involves asking participants to verbalize their thoughts as they perform a specific task. Think-aloud procedures are commonly used to examine cognitive processing strategies during decision making and choice tasks. The main advantage of this approach is that, unlike retrospective methods of obtaining feedback, concurrent think-aloud protocols are not influenced by omissions and systematic errors related to memory. The resulting narratives were used to develop a conceptual model describing how patients approach the decision to escalate care in the context of RA. A conceptual model reflecting how patients approach the decisions inherent in treat-to-target protocols may help improve shared decision making in clinical practice.
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