Shared decision-making for IBD treatment should be ‘patient centric’, evidence-based
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LAS VEGAS — A presenter at the Crohn’s & Colitis Congress highlighted tips for successful decision-making with patients with inflammatory bowel disease, including how to approach conversations about the benefits and risks of treatments.
“The safest treatment is often the treatment that effectively controls the IBD,” Millie D. Long, MD, MPH, vice chief of education and professor at University of North Carolina School of Medicine, said during her presentation. “Multiple new therapies have recently been approved, and each has specific safety considerations.
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“Consider efficacy and safety relationship, avoid longstanding steroid use [and] offer appropriate preventive strategies,” she continued, adding that “positioning and sequencing decisions should be patient-centric, including the clinical characteristics, and informed by shared decision-making.”
According to Long, decision aids may be helpful in improving communication with patients, as these tools provide a “realistic perception of outcomes for patients.”
Another part of the decision-making process is understanding patients’ concerns about treatment choices. Long highlighted the importance of finding the best way to communicate treatment risks to patients, avoiding words like “rare” or “infrequent” that may mean different things to patients.
Safety concerns of IBD therapies
“I just want to emphasize that the long-term safety profile of medications is not what drives patients’ choice,” Long said. “They really do want to reach a durable remission, so we need to actually frame it in both ways: medicine that will help them to achieve the most durable remission and then of course, discuss the safety profile [although] that may not be the driving choice.”
Physicians should “clearly” explain safety concerns by mechanism of action, Long noted, citing several considerations associated with anti-tumor necrosis factor agents, including risks for opportunistic infections and tuberculosis and hepatitis B virus reactivation.
Anti-integrins are “really quite safe” and gut-selective, she continued, despite a warning for progressive multifocal leukoencephalopathy. Sphingosine 1-phosphate receptor modulators, some of the “newest tools in our toolkit,” are known to have cardiovascular complications but no increased risk for serious or opportunistic infections.
Safety concerns related to Janus kinase inhibitors include lipid abnormalities, Long said, although she noted that in her experience, this is of little clinical significance. Interleukin-23 inhibitors have “excellent safety data,” she added, with similar incidence of serious infection as placebo. However, there are case reports of posterior reversible encephalopathy syndrome and neurological changes.
Long suggested that checklists “can be really helpful” in helping to determine which therapy is best to initiate in patients with IBD and to determine who would be at most risk for complications.
Give patients an ‘evidence-based choice’
It is crucial to discuss preventive strategies with patients to reduce the risk for complications, Long said. While primary and secondary measures like vaccines or skin-cancer screenings are an important part of general care, tertiary prevention is “what we practice each and every day with our IBD patients,” she said, which includes treating their disease, healing their bowel and aiming for mucosal healing to prevent long-term complications of disease and disability.
Long added: “I will discuss a preventive algorithm with my patients, even when I’m initiating the drug at the start. By doing this, we can help to prevent some of the complications.”
During conversations with patients, Long recommends emphasizing that safety for an individual patient is “related to the drug itself, whether that be efficacy, the patient, the individual characteristics and the disease characteristics themselves.”
It is like putting a “puzzle together for our patients,” she said, to help them make an evidence-based decision regarding their treatment.
“We really need to understand what shared decision-making is, and how does this impact patients,” Long said. “It is a process for physicians to inform and recommend treatment options and facilitates evidence-based patient choice, meaning we’re not throwing all the options out there and just asking the patient: ‘What do you want to do?’ We need to provide them with an evidence-based choice.”
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Long M. How I do it: My top 10 tips for having quality shared decision-making discussions with IBD patients about the benefits and risks of medications. Presented at: Crohn’s & Colitis Congress; Jan. 25-27, 2024; Las Vegas.
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