Shared decision-making gives patients a voice
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Shared decision-making involves considering patients’ preferences and values in cooperation with health care professionals before making treatment decisions.
The phrase “shared decision-making” is relatively new in the medical lexicon, but the concept has been in use for decades as medicine has gradually shifted away from paternalism and toward patient empowerment in decision-making. In psoriasis, we have a myriad of treatments ranging from topicals to phototherapy to pills and biologics, and thus for a chronic, lifelong disease, shared decision-making about treatment decisions is paramount.
First, it is critical to recognize that patient preferences and risk tolerance often do not match those of their dermatologists in the management of psoriasis. Second, a dermatologist’s perception of psoriasis severity often poorly correlates with the patient’s perception of the severity of their disease. This mismatch is seen not just in dermatological conditions but also with many other medical maladies including cancer and cardiovascular disease.
A recent review identified 23 studies about psoriasis and shared decision-making and identified four themes that underlie this approach: interpersonal communication; exchange of competence and knowledge; different worldview; and involvement and preference. While it would seem self-evident that shared decision-making should lead to better outcomes for patients with psoriasis, current data are inconclusive. Similarly, hard data that shared decision-making leads to better outcomes for clinicians with respect to one of our most pressing concerns — litigation — is limited. One simulation study in the emergency room setting found that using a shared decision-making approach resulted in an 80% reduction in the plan to contact a lawyer.
Shared decision-making is especially important when there is uncertainty about the risks and benefits of treatment decisions. In the time of COVID-19, uncertainty abounds in our daily life and decision-making. That is why the National Psoriasis Foundation COVID-19 Task Force, which I co-chair, recommends that “Shared decision-making between clinician and patient should be guided by several factors, including the potential benefits of treatment, the activity of skin and/or joint disease and response to previous therapies, as well as the patient’s underlying risk for poor COVID-19 outcomes, and ability to maintain measures to prevent infection with SARS-CoV-2 such as hand hygiene, wearing of masks and physical distancing as required by pandemic conditions. A review of known benefits of treatment accompanied by acknowledgment of the uncertainty related to the COVID-19 pandemic and a discussion of a patient’s individual circumstances and preferences should guide decision-making.”
In my practice, shared decision-making starts at the first encounter. We first assess both the physical and emotional impact of psoriasis from the patient perspective by asking: Thinking about how severe your psoriasis physical symptoms have been over the past week, such as itching, flaking, burning and pain, how severe has it been on a scale of 0 to 10, 10 being the worst and 0 being no symptoms? Similarly, thinking about how severe your psoriasis emotional symptoms have been over the past week, such as embarrassment, frustration and depression, how severe has it been on a scale of 0 to 10, 10 being the worst and 0 being no symptoms? For many of my patients, these questions can be remarkable, as no one has previously asked them about how psoriasis affects them personally.
As a dermatologist, these questions help me determine the intensity of the treatment regimen that may be necessary and provide a way for me to monitor patient progress over time. I also carefully explain to the patient the basics of psoriasis, genetics, immunology, natural history, comorbidities and treatment options so that we may have a mutual understanding of the disease and all it entails. Then, it is decision-making time.
Together, we first try to agree on a treatment approach, be it topicals, phototherapy, pills, biologics or some combination. With so many choices to consider, some patients may appreciate a decision aid (check out https://psoriasisdecisionaid.com, developed by Dr. Alexis Ogdie). Once we have agreed on an approach, we dive a bit deeper. For example, for biologics, I explain that they come in three basic flavors: TNF, IL-17 and IL-23. We discuss the risk and benefits of these various approaches and the fact that insurance approval may be a key component of the decision.
Finally, it is important to be empathetic to the patient’s preference. The data, science and our clinical experience may cause us to recommend a biologic, for example; however, alternative approaches are often preferred by patients, particularly those with needle phobias or a life experience that leads them to be worried about side effects. It is in these cases that the art of medicine takes precedent as we provide a supportive environment that personalizes the treatment approach to our individual patient, a process I find especially rewarding.
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