“We’re at a Complete Disconnect”: Marla Dubinsky, MD, on Bowel Urgency in IBD

Data from the Communicating Needs and Features of IBD Experiences (CONFIDE) study are calling attention to major communication gaps between patients with Crohn disease (CD) and health care providers, especially when it comes to bowel urgency and the need to address this symptom during treatment.

Findings were presented at Digestive Disease Week (DDW) 2024 in Washington, DC, this weekend and showed that although US and European patients classified bowel urgency among the most reported and impactful symptoms, bowel urgency was not recognized by providers as a top symptom impacting patients and thus did not influence their treatment decisions.

“We're at a complete disconnect between what patients want to talk about and what they're suffering from day to day that's actually keeping them isolated, increasing rates of anxiety, stress, depression, and we're not even listing it as the top 3 symptoms that I think are impacting my patient as provider,” Marla Dubinsky, MD, chief of the division of pediatric gastroenterology at Mount Sinai Kravis Children’s Hospital, explained in an interview with HCPLive.

Indeed, among more than 700 patients with moderate-to-severe CD across the US and Europe, the most common current symptoms reported were diarrhea (US, 55.3%; Europe, 54.7%), bowel urgency (US, 42.3%; Europe, 38.0%), and increased stool frequency (US, 40.0%; Europe, 36.6%), with patients additionally citing diarrhea (US, 68.9%; Europe, 74.9%), bowel urgency (US, 61.9%; Europe, 70.8%), and increased stool frequency (both 54.7%) as the most impactful symptoms.

However, 19.0% of US and 15.5% of European providers perceived bowel urgency as being among the top 5 symptoms most reported by patients, instead pointing to symptoms like diarrhea, blood in stool, and increased stool frequency.

Dubinsky explained that in order to make these findings actionable, clinicians must explicitly ask patients about not only the presence of symptoms, but also the severity, urgency, and impact on daily life.

“We as a community need to be focused on the symptoms that are actually going to impact our patients’ lives the most,” she concluded.

Reference:

Dubinsky M, Hunter Gibble T, Travis SP, et al. COMMUNICATING NEEDS AND FEATURES OF IBD EXPERIENCES (CONFIDE) SURVEY: IMPACT OF MODERATE-TO-SEVERE CROHN’S DISEASE SYMPTOMS ON HEALTH CARE PROFESSIONAL TREATMENT DECISIONS IN THE UNITED STATES AND EUROPE. Abstract presented at Digestive Disease Week (DDW) 2024 Annual Meeting. Washington, DC. May 17-21, 2024.