I am a little taken aback when this patient chooses an IV medication. She tells me her rationale in terms of her feelings, ideas, fears, and expectations and it makes complete sense. I may have misjudged her and without asking may have suggested a treatment that would not have been the best for her in terms of her lifestyle or beliefs.
You see, the dogma of Western Civilizations is “freedom is good”. If we agree that freedom is good, and that having more choices is a way to maximize freedom, we might conclude that having more choices is good for us. For example, giving patients complete control over their medication choices will maximize their freedom and that is a good thing? Or is it?
Imagine this extreme scenario… It's no longer the case that a patient goes to the doctor, and the doctor tells the patient what to do. Instead, the patient goes to the doctor, and the doctor says, "Well, we could do A, or we could do B. A has these benefits, and these risks. B has these benefits, and these risks. What do you want to do?” And the patient says, "Doc, what should I do?” And the doctor says, "A has these benefits and risks, and B has these benefits and risks. What do you want to do?” And the patient says, "If you were me, Doc, what would you do?” And the doctor says, "But I'm not you“.
This is an all-too-common conversation that we’ve all heard before! Shared decision making sounds great because it espouses a collaboration between the patient and the healthcare provider. When it comes to choosing a medication, we’re led to believe that patients who are engaged in the decision-making process are more “bought into” the decision and ergo, they are more likely to follow through with it.
When it comes to selecting medications, patient autonomy may put the patient at risk of making a poor choice.
Making a good decision relies on being equipped with the knowledge about the disease, the medication choices, and the individual patient characteristics that might make one choice better than another. Some patients are very sophisticated and do a lot of research and are well informed about their treatment choices. But not all – many patients are not in the best frame of mind and do not possess sufficient knowledge to systematically assess all of their options.
We know from other areas that too much choice can lead to paralysis. Think of mutual funds – people are reluctant to invest if there are too many options to choose from. When we make a choice, our expectations escalate and we think “This will be the best medication ever because I chose it”. There is a fine line when it comes to how much choice to give to our patients when it comes to selecting a treatment.
In reality, many choices we make are between things that are not that much different from one another. The value of choice depends on our ability to perceive differences between the choices. For example, when you offer a patient 11 biologic options and ask the patient to choose one, is it really fair? How can a patient perceive meaningful differences between the 11 different biologics? Can we as physicians?
For example, w\When looking at efficacy of a specific biologic treatment (or any treatment), can I estimate the efficacy directly to a given individual? We all know the answer – absolutely not! Therein lies one of the fundamental challenges with applying evidence-based medicine, which is derived from population studies, to individual patients. Of course, estimating a treatment’s efficacy in a given individual is complex because it involves multiple variables, and it is impossible to apply population averages to individual patients. However, our efficacy decisions are guided by the literature, which reports measures such as ACR 20, 50 and 70.
In reality, perceived efficacy of a given treatment in an individual patient involves an element of chance. Sometimes we start a patient on an anti-TNF and it doesn’t work at all in that patient, despite a large body of evidence that supports good efficacy, on average, in a large sample of patients. We take calculated risks, but there is still an element of chance – we can’t know for sure.
Let’s apply the same logic to a question of treatment safety. For example, let’s consider the risk of infection over a year on a given treatment. Can we accurately predict which of our patients will develop a given infection when treated with a specific biologic? No! The best we can do is try to minimize the risks we expose our patients to through careful patient selection (e.g., patients with comorbid diabetes are at higher risk for infections, as are those on high doses of corticosteroids).
Choice reflects freedom when we can perceive the differences between them.
Let’s extend our example now to patient perceptions of the impact of a given treatment on their lifestyle. We know that patient preferences have an impact on treatment outcomes, largely related to their persistence on therapy, which is influenced by their adherence to the treatment regimen. Patients know themselves better than we know them when it comes to their preferences and lifestyle. The problem is, we rarely give them the opportunity to consider how a medication choice will affect their lifestyle. Or how they might fit a new medication into their current lifestyle. Whereas efficacy and safety outcomes are nearly impossible to predict in an individual patient, we can much more accurately predict how a route of administration will impact their lifestyle by talking to patients about their preferences.
There are many treatment-related factors that can affect a patient’s lifestyle. This is not a comprehensive list; other factors can be at play in individuals such as pregnancy potential/family planning; employment; aversion to frequent lab tests or monitoring; risk aversion regarding rare adverse events; diet. However, these six factors are influential to the majority of our patients and are a good place to start when we consider how a medication can impact a patient’s lifestyle.
We know from studies that patients vary widely in their preference for medication route of administration. For example, the RIVIERA study evaluated the determinants of anti-TNF naïve patients’ preferences for the route of anti-TNF administration. 802 RA patients were surveyed. The IV and SC routes of administration were preferred by 50.2% and 49.8%, respectively. Reasons for the choice of IV administration were the safety of treatment at the hospital and the reassuring effect of physician presence. The SC administration was chosen for the convenience of treatment and in particular for home treatment. Patients dissatisfied with current therapy due to side effects preferred SC administration whereas patients choosing the IV route had slightly higher disease activity scores.
We also know that disease context influences patient perceptions. Not surprisingly, patients with acute and severe disease prioritize efficacy over convenience – we have all seen patients who would accept great inconvenience in order to improve their current health when they are feeling at their worst. Whereas patients with more chronic but less severe disease generally place more value on the convenience aspects of drug administration. Remember that RA can be a relapsing and remitting disease – therefore patient values and preferences can change over the course of their treatment. This underscores the importance of checking in with them about how their medication regimen is fitting into their lifestyle at routine follow-up visits, as their values may change depending on the state of their disease.
RheumChoice.com is a free online tool (entirely developed by a rheumatologist - Dr. Andy Thompson) that patients can use to start thinking about what features of medications are important to them and how they might affect their lifestyle. RheumChoice offers a patient-friendly description of factors that can influence what biologic treatment might suit their individual lifestyle and preferences.