Shared decision making in dermatology: asking patients, ‘What is important to you?’
It is much more important to know what sort of a patient has a disease than what sort of a disease the patient has. William Osler, 1913
A 46-year-old man with psoriasis attended my (A.A.'s) clinic a few weeks ago with his wife. The presence of his spouse alerted me to the fact that this might be a high-stakes consultation (he normally attended alone). He suffered from psoriatic arthritis, which had responded well to leflunomide prescribed by his rheumatologist; his skin, although not clear, was much better following a recent course of phototherapy. Why were he and his wife so negative about his progress when both skin and joints had improved? Playing for time, I went over his social history again. He was a kitchen porter in a prestigious local golf club where he had worked for nearly 10 years. His job was secure, but he was self-conscious about the psoriasis on his hands. I was trying to find out what was important to him in terms of treatment outcomes. On further questioning it transpired that he had previously been a chef at the golf club, but had been forced to switch to kitchen porter as his hands were so badly affected by psoriasis. The long faces reflected his disappointment that his hands were still not clear; returning to being a chef was not an option. What was he like as a chef? His face lit up: one of the best! He and his wife then told me about his passion for cooking. At last I had discovered what sort of a patient was sitting in front of me, having failed to do so previously. My focus shifted so that I was able to see his psoriasis and his work through his eyes.
After an animated discussion about food and cooking, we discussed other treatment options that might help both his skin and the arthritis. I provided him with information on some new treatment options1 and suggested that while he considered these, I would speak to his rheumatologist to consider the next step. The outcome was that his rheumatologist and I stopped treating him as if he had two diseases, and agreed on treatment options for his joints and skin, with anticipated greater therapeutic efficacy than our individual efforts had achieved. We refocused on the prospect of enabling him to return to his much-loved work as a chef. The next time I saw my patient, he had considered the information I had provided. Following a process of shared decision making that focused on what was important to him, he opted for a self-injected antitumour necrosis factor-α therapy; a new therapeutic plan was set into motion.
The quote at the start of this editorial reminds us that patient-centred care is not a new concept. However, it was not until Stewart2 confirmed its relevance to a global audience that it became widely accepted as a goal for mainstream practice. There are many resources available to support its application in practice.3, 4 Charles et al.5 published the seminal work on one of these components, shared decision making, identifying it as a process where clinicians and patients collaborate to make healthcare decisions based on the best available evidence and the patients' preferences.5
Contemporary dermatologists may feel pressured by the healthcare environment and systems in which they operate to focus on the disease rather than the patient who has the disease. This is a mistake, as multiple treatment options for psoriasis make it even more important for dermatologists to practise shared decision making. It is particularly appropriate for psoriasis, where several options are available but the evidence does not point to a clear best choice (‘equipoise’). Furthermore, new treatments and models of care are anticipated for psoriasis: interleukin-17 inhibitors (new, self-injected biological therapies);6-10 small molecules such as tofacitinib11 (an oral Janus kinase receptor inhibitor) and apremilast12 (a phosphodiesterase inhibitor), both of which have the potential to treat psoriasis by modulating proinflammatory cytokines; developing insights into utilization of fumaric acid esters;13 the wider availability of phototherapy with new models of care;14 and internet-enhanced supervision of topical therapies for psoriasis.15 Importantly, for shared decision making to be effective, it is essential for the clinician to understand the patient's desired role in this process16 and to ask the patient, ‘What is most important to you?’17
How will dermatologists help their patients to negotiate this maze of treatments and models of care for psoriasis? The prospect of ‘stratified medicine’, where psoriasis therapies are tailored to the individual patient according to clinical phenotype, genotype or endotype, remains remote.18 Given the range of options available to patients with psoriasis, we need to and can help patients in different ways. For example, dermatologists can learn to utilize more shared decision-making skills. The decision-making stage of the conversation with patients utilizes a three-step model of ‘Choice talk, Option talk and Preference talk’.17 To provide information about the options, dermatologists will need to provide patients with decision-making aids that present the options, and answer the questions that patients most frequently have about those options.19-22 Decision aids have been found to be effective in enhancing patients' knowledge and improving their accuracy of risk perception, leading to decisions that are informed and consistent with their values. Furthermore, patients are more likely to be active in decision making when it is supported by decision aids, but tend to choose more conservative treatment options than those recommended by their clinicians.23 Having provided the information, the question ‘what is important to you?’ can be revisited, and the patient can make an informed choice.17
The good physician treats the disease; the great physician treats the patient who has the disease. William Osler, 1915
If we had a keen vision and feeling of all ordinary human life, it would be like hearing the grass grow and the squirrel's heart beat, and we should die of that roar which lies on the other side of silence. As it is, the quickest of us walk about well wadded with stupidity. George Eliot, Middlemarch