Shared decision-making requires two-way information, numeracy literacy
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To improve shared decision-making in care for patients with inflammatory bowel disease, the problem of numeracy – both among patients and providers – must be discussed, according to a presentation at Crohn’s and Colitis Congress.
“In America, numeracy is a problem for everyone. Over 50% of Americans lack the minimum basic skills to apply math to print materials and this applies to our patients and our providers,” Meenakshi Bewtra, MD, PhD, MPH, of the University of Pennsylvania, said during her presentation. “Specifically, we have issues with risk presentation, framing, proportions and probabilities and there is an epidemic of denominator neglect.”
It’s in this framing that Bewtra said providers can better inform patients and take the steps needed to move to shared decision-making.
“Risk presentation can make things sound scary in IBD. We need to consider the absolute risks of therapy but also the absolute risks of not using these therapies,” Bewtra said.
Numeracy
Bewtra outlined how providers can begin to better present numbers – of complication risk or risk of active disease – to patients. These numbers should be presented in absolutes such as treating 1,000 patients to see one infection vs. five untreated active disease cases leading to one death or at least put on the same common denominator.
“We need to first avoid vague labels. They lead to inconsistent interpretations of what risk is,” she said. “Avoid making small numbers look very large by using probabilities and proportions because these require conditional math. If people are bad at math, they’re really bad at conditional math.”
Rather, providers often present risk as five times lower with a certain medication or just “really, really high.” In an attempt to make decisions easier, they over simplify and it is easy for small numbers to look or sound very alarming, she said.
“We should be using frequency or count data ... and ideally with the same denominator because people focus on the top number and completely ignore the bottom number,” Bewtra said. “All of these influence how we make decisions in medicine.”
Providers should use consistent, absolute form when discussing risks, but also when discussing the benefits of therapies.
“We also need to discuss the benefits of our therapies or – keeping the same frame – avoiding the risks of flares, hospitalizations, surgery and death,” Bewtra said. “Unfortunately, patients and providers get scared of terms like biologics or surgery and are far more willing to accept steroids or a flare.”
This comes down to statistical reasoning vs. anecdotal reasoning and illustrates the differences in how risk is perceived.
“Epidemiologists view risk as a measured property of a group of people, but patients and providers view this as a measured property of me and that perception becomes reality,” Bewtra said. “We are far more willing to accept common risks – flares, steroid use – that we feel comfortable with than uncommon risks – infection or cancer – that are unfamiliar and therefore more scary.”
Shared decision-making
Improving numeracy among providers should allow for improved shared decision-making in IBD, but that also depends upon providers understanding that patient preference will still play into final treatment decisions.
“Increasingly, we have been focusing on shared decision making. Here, information is two-way. We give information to patients and patients share their concerns, values and preferences with us. Decision making is a joint effort. It’s important to understand shared decision-making is not always the most appropriate situation, especially in acute conditions where there’s one absolute therapy, but daily IBD care is very appropriate for shared decision making,” Bewtra said.
In a few studies Bewtra conducted, she found patient education increased willingness among patients to accept risks in exchange for long-term remission. She reminded providers, though, “Not all patients are equal.”
“Providers also have very different preferences than their patients,” Bewtra said. “If we are so different in our preferences, how do we get to this ideal of shared decision-making? The hallmark is two-way information. We need to understand our patient’s preferences accurately, but we also need to communicate information and give them education to avoid anecdotal decision making. Education works.”
Bewtra referred to materials provided by CCF when a provider becomes a member. These materials have educational tools with graphic representation of risks as well as education about surgery.
“Education is critical in shared decision-making so we need our providers to understand the numbers we’re discussing. ... Remember that numeracy an issue for all of us,” she said. “Shared decision-making is essential, but preferences vary so accurately understanding preferences and education can really enhance shared decision-making.”
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Bewtra M. Holistic View of IBD: Diet, Disparities and Well-Being. Presented at: Crohn’s and Colitis Congress (virtual); January 21-24, 2021.
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