Impact of IBD on Quality of Life

Miguel Regueiro, MD:David, I’m going to ask you a question on quality of life, and then we’re going to wrap this up. Can you talk to us about the importance of quality of life in patients with IBD [inflammatory bowel disease] and specifically in ulcerative colitis?

David P. Hudesman, MD:It’s a very important discussion to have with patients. When you start doing this, you’re focusing on the symptoms: how many times they go to the bathroom. It might sound pretty good, and they’re not looking happy. Are they socializing? Are they getting out with their friends? Going to school? Are they eating the foods they want to eat? These are important questions to ask to start the discussion. It’s also difficult to sort. Our treatments are limited for a lot of major quality-of-life factors. Specifically for ulcerative colitis—you’re alluding to this in the differential—there’s urgency. It’s nice now that we’re talking about this a lot more, but urgency is 1 symptom of ulcerative colitis that negatively affects the patient’s quality of life. Starting to measure this in clinical trials, starting to ask that and grade that to a certain extent, is extremely important. We can improve on that. Fatigue is also a big issue, overlapping, psychosocial factors, anxiety, stress, and so forth. It’s important to ask those questions early and then hopefully have a support system, whether it’s at your institution or from a colleague or a third party, but have a plan in place to help with those.

Miguel Regueiro, MD:It’s so important—fatigue, work, school, relationships, psychosocial factors. Marla, I’ll give you a second to give input on quality of life because you’ve done some work on this as well. Then we’ll wrap up this segment. Tell us your thoughts on quality of life.

Marla Dubinsky, MD:We typically view how we measure quality of life based on the symptoms Dave was noting. We think, “Your quality of life must be good. You have only 4 stools; you used to have 10.” It’s relative to our view. When you survey patients vs health care providers, particularly on the topic of urgency, we’re disconnected. One, we’re not asking it enough and we’re not asking it correctly. We must understand that if a patient has 1 accident, then that will forever change their life with IBD, it will spiral into a very anxiety-provoking experience, social anxiety, bathroom anxiety. There’s so much we’re not asking. We need to reframe how we view these diseases, how they are impacting their day-to-day life, and stop talking about mucosal healing translating to a quality of life that we view as acceptable. We need to reframe this, and we need a lot more work to understand this.

Miguel Regueiro, MD:Sometimes when patients come in—Ellen, I’ll let you briefly comment— it’s important to ask them, “What do you want out of this visit, and what is impacting you the most?” That answer might be very different from focusing on mucosal healing. Ellen, a brief comment, and then we’ll wrap up.

Ellen J. Scherl, MD:There’s a national survey of nearly 500 patients in which three-quarters thought it was normal to have flares. This is an opportunity to explain to patients that, No. 1, symptoms don’t always correlate, and No. 2, it’s not just getting the symptoms under control at any given time, but over time. As we’ve all said, looking at fecal calprotectin will help reverse the progression of disease, which is difficult for patients to understand when they’re concerned about quality of life.

Miguel Regueiro, MD:Absolutely. That’s an important point, Ellen. Thank you. I agree completely.

Transcript Edited for Clarity