How Patients Approach the Decision to Escalate Treatment
How Patients Approach the Decision to Escalate Treatment
Participants (n = 88) ranged in age from 20 to 83 years [mean 55 years (S.D. 13)]; 68% were Caucasian, 74% were women and 53% were married. Approximately one-third had a college degree or higher education. On average, participants had been living with RA for nearly 12 years and 21% were currently on a biologic.
While we undertook this study to learn how patients with active RA approach the decision to escalate care, the most striking finding that emerged from the think-aloud interviews with patients was that many patients did not view that they had a choice or a decision to make. In other words, for many patients with RA, consideration of trade-offs was immaterial. Individual differences in the degree to which patients were impacted by their disease appeared to differentiate those patients who were open to considering options vs those who viewed themselves as having only one possible course of action (whether it was to change treatment or to remain with the status quo). The conceptual model (Fig. 2) that emerged from the think-aloud subject data posits that patients who are either very highly impacted by their disease (e.g. disabled by current symptoms, very worried about future impact of symptoms) or not at all impacted by their disease (despite meeting guideline criteria for escalation of care) view themselves as having only one possible course of action and are therefore not open to considering alternative options. In contrast, patients who are moderately impacted by their disease appear to be more willing to consider trade-offs. The following sections describe each phenotype in more detail and representative quotations are provided in Table 1 and Table 2.
(Enlarge Image)
Figure 2.
Relationship between disease impact and openness to engage in decision making
Patients With High Disease Impact. While patients who felt highly impacted by their disease viewed themselves as having only one option, they did not all agree on what that option was. Some patients with high disease impact viewed maintaining the status quo (i.e. leaving the current treatment regimen unchanged) as their only alternative (Table 1). They described high levels of difficulty coping with their illness, but also strongly believed that adding a medication would result in certain additional morbidity. Therefore, despite being strongly impacted by RA, these participants viewed adding another medication as an unacceptable alternative because they felt unable (too sick) to contend with any additional health threats. These patients did not demonstrate an openness to considering trade-offs and have preferences that likely contribute to the lower than expected rates of treatment escalation observed in clinical practice.
In contrast, other patients reporting high disease impact felt that changing their status quo, i.e. escalating treatment, was their only option (Table 1). They described their suffering due to RA as oppressive and unbearable and viewed medication as their primary (or only) tool to manage RA symptoms. Medication was described as a lifeline, and medication escalation as the method to reduce disease-related distress and disability. These patients also did not demonstrate willingness to consider trade-offs; however, their preferences are concordant with treat-to-target protocols and therefore do not contribute to the gap between recommendations and observed clinical practice patterns.
Patients With Low Disease Impact. Despite meeting guideline criteria to escalate care, these patients were not sufficiently impacted by their current disease, or concerns regarding future consequences of untreated disease, to perceive a need for additional treatment. They were able to maintain their level of function despite having signs of active RA, and had a strong belief that medications would cause side effects that would interfere with their ability to work or to engage in the recreational activities they enjoyed. These patients focused on preserving their status quo (i.e. avoiding additional medications) in order to protect their current quality of life. They did not demonstrate openness to considering alternatives and expressed an unwillingness to add or change medication despite meeting criteria for treatment escalation.
Patients With Moderate Disease Impact. Participants who were moderately impacted by their disease and/or medications were more likely to perceive a decision and thus more open to considering the pros and cons related to possible alternatives. In all cases, however, evaluations of the presented trade-offs were made in the context of factors external to the medication characteristics included in the paired comparison tasks. These factors included personal characteristics (sociodemographic characteristics and role responsibilities) and elements of the patient–physician relationship. Notably, none of these factors consistently increased or decreased willingness to escalate care.
Personal Factors. Although ethnicity and gender are frequently cited as predictors of risk perception, in this study the only sociodemographic characteristic brought up by patients was age. While older adults with RA are generally viewed as being more risk averse, participants cited older age as a reason to both accept and refuse the risks associated with additional medication. Some believed that their advanced age made it easier for them to accept the possible risks of adverse events since they had less to lose, whereas others felt that older age decreased their ability to cope with drug toxicity and were therefore more risk averse.
Role responsibilities were frequently raised as an important factor influencing how patients evaluated competing risks and benefits. As with age, responsibilities could be associated with either a positive or negative attitude towards changing medication. Some expressed concern about the impact of toxicity on their ability to work or care for their children as a reason to maintain the status quo. The same responsibilities motivated others to escalate RA medication in order to improve function and to prevent future morbidity.
Patient–Physician Relationship. Participants also described trust in one's physician and communication between the patient and physician as factors that influenced their trade-offs. Lack of trust was most frequently described as a barrier to escalating medication. Mistrust of medical providers and suspicions related to medications themselves deterred several participants from trying new RA treatments. Some did not believe that physicians were fully aware of all the potential risks associated with medications, while others felt that physicians did not take into account their personal past medical experiences when prescribing new medication. Several noted that they felt like guinea pigs as their physicians experimented with different medication to treat their RA. Others expressed an unwillingness to try new medications because they felt that their providers did not adequately inform them of the expected risks and benefits. Many participants described working with multiple physicians and some were concerned that providers were not fully aware of what others were prescribing. The perceived lack of communication between providers amplified some participants' concerns regarding potential interactions between prescribed medications.
Only one participant described her relationship with her physician as a facilitator towards escalating RA medication. This patient described both trust and open communication between herself and her physician as key to facilitating escalation of RA medication (Table 2).
Results
Subject Characteristics
Participants (n = 88) ranged in age from 20 to 83 years [mean 55 years (S.D. 13)]; 68% were Caucasian, 74% were women and 53% were married. Approximately one-third had a college degree or higher education. On average, participants had been living with RA for nearly 12 years and 21% were currently on a biologic.
Overview of Conceptual Model
While we undertook this study to learn how patients with active RA approach the decision to escalate care, the most striking finding that emerged from the think-aloud interviews with patients was that many patients did not view that they had a choice or a decision to make. In other words, for many patients with RA, consideration of trade-offs was immaterial. Individual differences in the degree to which patients were impacted by their disease appeared to differentiate those patients who were open to considering options vs those who viewed themselves as having only one possible course of action (whether it was to change treatment or to remain with the status quo). The conceptual model (Fig. 2) that emerged from the think-aloud subject data posits that patients who are either very highly impacted by their disease (e.g. disabled by current symptoms, very worried about future impact of symptoms) or not at all impacted by their disease (despite meeting guideline criteria for escalation of care) view themselves as having only one possible course of action and are therefore not open to considering alternative options. In contrast, patients who are moderately impacted by their disease appear to be more willing to consider trade-offs. The following sections describe each phenotype in more detail and representative quotations are provided in Table 1 and Table 2.
(Enlarge Image)
Figure 2.
Relationship between disease impact and openness to engage in decision making
Closed to Alternative Options
Patients With High Disease Impact. While patients who felt highly impacted by their disease viewed themselves as having only one option, they did not all agree on what that option was. Some patients with high disease impact viewed maintaining the status quo (i.e. leaving the current treatment regimen unchanged) as their only alternative (Table 1). They described high levels of difficulty coping with their illness, but also strongly believed that adding a medication would result in certain additional morbidity. Therefore, despite being strongly impacted by RA, these participants viewed adding another medication as an unacceptable alternative because they felt unable (too sick) to contend with any additional health threats. These patients did not demonstrate an openness to considering trade-offs and have preferences that likely contribute to the lower than expected rates of treatment escalation observed in clinical practice.
In contrast, other patients reporting high disease impact felt that changing their status quo, i.e. escalating treatment, was their only option (Table 1). They described their suffering due to RA as oppressive and unbearable and viewed medication as their primary (or only) tool to manage RA symptoms. Medication was described as a lifeline, and medication escalation as the method to reduce disease-related distress and disability. These patients also did not demonstrate willingness to consider trade-offs; however, their preferences are concordant with treat-to-target protocols and therefore do not contribute to the gap between recommendations and observed clinical practice patterns.
Patients With Low Disease Impact. Despite meeting guideline criteria to escalate care, these patients were not sufficiently impacted by their current disease, or concerns regarding future consequences of untreated disease, to perceive a need for additional treatment. They were able to maintain their level of function despite having signs of active RA, and had a strong belief that medications would cause side effects that would interfere with their ability to work or to engage in the recreational activities they enjoyed. These patients focused on preserving their status quo (i.e. avoiding additional medications) in order to protect their current quality of life. They did not demonstrate openness to considering alternatives and expressed an unwillingness to add or change medication despite meeting criteria for treatment escalation.
Open to Alternative Options
Patients With Moderate Disease Impact. Participants who were moderately impacted by their disease and/or medications were more likely to perceive a decision and thus more open to considering the pros and cons related to possible alternatives. In all cases, however, evaluations of the presented trade-offs were made in the context of factors external to the medication characteristics included in the paired comparison tasks. These factors included personal characteristics (sociodemographic characteristics and role responsibilities) and elements of the patient–physician relationship. Notably, none of these factors consistently increased or decreased willingness to escalate care.
Personal Factors. Although ethnicity and gender are frequently cited as predictors of risk perception, in this study the only sociodemographic characteristic brought up by patients was age. While older adults with RA are generally viewed as being more risk averse, participants cited older age as a reason to both accept and refuse the risks associated with additional medication. Some believed that their advanced age made it easier for them to accept the possible risks of adverse events since they had less to lose, whereas others felt that older age decreased their ability to cope with drug toxicity and were therefore more risk averse.
Role responsibilities were frequently raised as an important factor influencing how patients evaluated competing risks and benefits. As with age, responsibilities could be associated with either a positive or negative attitude towards changing medication. Some expressed concern about the impact of toxicity on their ability to work or care for their children as a reason to maintain the status quo. The same responsibilities motivated others to escalate RA medication in order to improve function and to prevent future morbidity.
Patient–Physician Relationship. Participants also described trust in one's physician and communication between the patient and physician as factors that influenced their trade-offs. Lack of trust was most frequently described as a barrier to escalating medication. Mistrust of medical providers and suspicions related to medications themselves deterred several participants from trying new RA treatments. Some did not believe that physicians were fully aware of all the potential risks associated with medications, while others felt that physicians did not take into account their personal past medical experiences when prescribing new medication. Several noted that they felt like guinea pigs as their physicians experimented with different medication to treat their RA. Others expressed an unwillingness to try new medications because they felt that their providers did not adequately inform them of the expected risks and benefits. Many participants described working with multiple physicians and some were concerned that providers were not fully aware of what others were prescribing. The perceived lack of communication between providers amplified some participants' concerns regarding potential interactions between prescribed medications.
Only one participant described her relationship with her physician as a facilitator towards escalating RA medication. This patient described both trust and open communication between herself and her physician as key to facilitating escalation of RA medication (Table 2).
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