Bridging the Gap: Patient and Medical Perspectives on IBD Remission

Katy Bagnato was diagnosed with ulcerative colitis in 2010 when she was a freshman in high school. Until last month, Katy had never been in clinical remission, although there were times when she thought that might be the case because she wasn’t having symptoms.

There were periods when I thought, ‘I’m feeling really great, I’m not going to the bathroom, I feel like I’m in remission.’ Then I’d go to the doctor and find out my inflammation numbers were super high,” she says.

Katy’s experience highlights a common difference between how people with inflammatory bowel disease (IBD) view remission and how healthcare professionals define it. This gap in understanding is the focus of a recent survey by the Crohn’s & Colitis Foundation, which highlights the differences between patient perspectives and medical definitions of remission in IBD and their implications.

How Healthcare Professionals and Patients View Remission

Healthcare professionals define remission based on absence of inflammation measured during a colonoscopy (endoscopic remission), at the tissue level (histologic remission), or in blood or stool tests (biochemical remission).

The Foundation’s survey of nearly 1,500 IBD patients showed that while two-thirds believe remission is possible, their definitions of remission can vary. Most commonly, patients associate remission with reduced or a complete absence of symptoms.

The Importance of Aligning Perspectives

The differing perspectives between a patient and the medical community’s definitions can have substantial implications for patients. Those who only focus on symptom control may underestimate the importance of achieving deeper levels of remission, which is very important in the management of their disease. Ongoing inflammation, even without symptoms, can lead to disease progression and complications over time.

“My GI would say, ‘it’s great that you’re feeling great, but we need to adjust your treatment because the longer-term effects of not being in remission are not good for you,’” says Katy.

Bridging the Communication Gap

Healthcare professionals are increasingly adopting a treat-to-target approach for collaborating with their patients to manage their IBD and improving their health. This involves identifying a patient’s treatment goals (setting a target), selecting a treatment, monitoring their progress, and making changes along the way to help them reach their goals.

For this approach to succeed, patients and healthcare professionals must share a common understanding of remission and treatment goals.

Encouragingly, the Foundation study found little evidence of barriers preventing patients from discussing remission with their healthcare professionals. This opens up opportunities for improved communication and education.

As Katy learned from her conversation with her doctor, achieving true remission in IBD often goes beyond symptom control. For patients, this means:

• Engaging in open discussions with their healthcare team about what remission means and how it’s measured.
• Understanding the importance of objective tests, like colonoscopies, in assessing their disease activity.
• Recognizing that ongoing treatment may be necessary even if symptoms subside.

For healthcare professionals, the study highlights the need for:

• Clear communication about different types of remission (clinical, endoscopic, histologic).
• Patient education on the long-term benefits of achieving deeper levels of remission.
• Regular discussions about their patients’ remission goals throughout the treatment journey.

By bridging this knowledge gap, patients can work more effectively with their healthcare teams to achieve meaningful, long-lasting remission and improve their overall quality of life with IBD.

“I would say that you have to balance how you’re feeling with what the tests are telling you. If you’re feeling good, that’s awesome. It makes living with IBD easier. But if you have active disease, that is going to be hard on