By Jay Mehta, MD
As the parent of a 4-year-old, and the resident of a major metropolitan area, the word “share” (and its various constructions) is a daily part of my lexicon. I’m constantly reminding my daughter the importance of “sharing” (which she thinks is giving her friends the toy that she doesn’t want to play with). The other day I took an Uber, and on my last vacation, I stayed in a house I found on AirBnB, both of which are parts of the “sharing economy.” And yesterday, I “shared” with my Twitter followers an interesting article on medical education.
As physicians, we are, no doubt, familiar with the concept of “shared decision making (SDM),” in which both the clinician and patient (and/or parents) express their opinions and values and a decision about how to proceed is made together. (For her part, the previously mentioned 4-year-old tried to engage in shared decision making with my wife and me when we told her she was going to have a little brother: “I don’t want a little brother. Can I have a sister instead?”). Our adult colleagues have embraced SDM in recent RA Treat to Target recommendations (Overarching Principle A: “The treatment of RA must be based on a shared decision between patient and rheumatologist.”). In other chronic diseases, SDM has been shown to improve adherence and, in pediatrics, SDM has been associated with decreased decisional conflict and improved knowledge.
So it’s no surprise that 75% of pediatric rheumatologists and gastroenterologists (no difference in responses between the two specialties) say that SDM is their typical approach initiating anti-TNFα agents, as reported in a recent paper in the Journal of Pediatrics by colleagues at Cincinnati Children’s Hospital (including CARRA’s own Dan Lovell). In this study, use of SDM was assessed by presenting 4 examples of approaches to treatment decision making and asking which the respondent would use. They then asked what factors facilitated SDM and found that parent trust and parent emotional readiness were very helpful. When using SDM with adolescents, patient trust, emotional readiness, and the patient being ready for the discussion were thought to facilitate the discussion.
They also investigated what kept pediatric rheumatologists and gastroenterologists from using SDM. They found that insurance limitations and adolescent difficulty with accepting the diagnosis were the main hindrances. We’ve all had the adolescent who refuses to believe he or she is sick. That patient’s preferences include “Let me go home.”
But what really caught my eye is that the same group of authors found that what we say we should be doing is not actually what happens in the real world. They observed real clinic visits with pediatric rheumatologists and gastroenterologists where prescribing biologics was discussed. In almost all of these discussions, the patient was not included in the discussion. In most discussions, the provider provided detailed information about his or her preferred treatment option, and there was not much elicitation of parental preferences, treatment goals, or parental knowledge. Even though it was rarely requested, an explicit treatment recommendation was given in almost all visits. Most surprising, in 1/3 of visits, a treatment decision was never made explicit but the provider took steps to implement the preferred treatment.
So where’s the disconnect? Why are we not as good as we think we are, like the 80% of people who think they are above-average drivers? Personally, I didn’t realize there’s a systematic approach to SDM, that it’s not just “Here are the ways we can treat your child’s arthritis. What do you want to do?” Rather, it’s important to start by reminding parents they have options and that their preferences are important, and only then present the options, all the while exploring the patient’s and parent’s preferences. Finally, if a decision is made (which doesn’t need to happen right then and there) we need to remind patients that we will re-review the decision in the future.
Voltaire said “The art of medicine consists of amusing the patient while nature cures the disease.” As the annoyed looks my teenage patients often give me when I try to make jokes indicate, sometimes patients just don’t want to be amused. I should probably first ask them what they prefer.
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