The management of Crohn’s disease (CD) is complex, requiring a balance between clinical priorities and patient preferences. Shared decision making plays a crucial role, but barriers such as different viewpoints and priorities, time, costs, communication, health literacy, and psychological factors can often complicate the process. Addressing these challenges through personalized care, digital tools, and team-based support can improve patient outcomes and empower informed decision making.

Shared decision making is important, but it is complicated because, realistically, does a patient ever really give truly informed consent? Most patients did not go to medical school or receive gastrointestinal training. Patients may have a different viewpoint, and true shared decision making takes time. It is important to understand that patients and providers may be approaching management from 2 different perspectives, and you have to meet in the middle.

Many patients with CD come into this discussion feeling scared and confused, and they often have a different agenda than their physicians. Patients with CD overwhelmingly want more detailed information at the time of diagnosis. However, when a provider has only 20 to 30 minutes to meet with a new patient, explaining what CD looks like, along with describing the treatment options (ie, biologics, biosimilars, oral therapies, and prednisone), each with its own benefits, side effects, and insurance barriers, is nearly impossible. It is no surprise that many physicians find inflammatory bowel disease care to be overwhelming.

The shared decision-making process includes coming to an agreement about what it is that you expect to happen and over what time frame. When patients with CD say that they want symptom control, they often mean that they want the diarrhea and pain to stop now. Conversely, as a provider, I may be concerned about the patient’s inflammation. It is not that the patient’s symptoms are ignored—it is that, without controlling inflammation, the long-term risks are much worse. And that is where the discussion should begin.

Cost may also be an important factor in management decisions. From a clinical perspective, a biologic might be the ideal choice for a patient with CD, but if their co-pay is $1000 per infusion, that therapy may not be an option. So, cost remains a major barrier, and, while biosimilars have reduced expenses at a systemic level, those savings do not always fully reach the patient.

Studies also show that patients with CD highly value avoiding surgery and achieving long-term remission, but they are also willing to accept more treatment risks than many providers assume. Without directly asking about risk tolerance, providers may make incorrect assumptions about what a patient is or is not willing to try.

For shared decision making to be effective, several barriers must be addressed, including health literacy and comorbidities. If patients with CD do not understand the underlying mechanisms causing their symptoms, it is difficult to make truly informed decisions. Anxiety, depression, and sleep disorders also impact a patient’s ability to engage in decision making. If a patient is too fatigued or overwhelmed to process information, they are likely to become more passive in their decision making.

Finally, it is important to recognize that shared decision making is not a single conversation; it is an ongoing discussion so that patients feel more comfortable about the decisions they are making for themselves. Sometimes, the first visit is focused on making sure that the patient understands what is happening to their body. Then, they can go home with vetted resources and return in a week or 2 for a follow-up (or even just have a brief phone conversation) to discuss management options.

The future of CD care should leverage predictive models, decision aids, and patient-reported outcomes to ensure that treatment decisions are more precise and personalized. Additionally, health care teams, including nurses, pharmacists, dietitians, and social workers, should be used to provide comprehensive support.