Inflammatory Bowel Disease (IBD): Patient Self-Management and Remote Symptom Monitoring in Outpatient Care
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Inflammatory bowel disease (IBD) self-management in outpatient gastroenterology care requires daily patient behaviors beyond medication prescribing to achieve core goals of symptom control, complication prevention, and improved quality of life. Key self-management activities include recognizing and responding to symptoms, adhering to prescribed medications, adapting diet to avoid triggers, navigating healthcare processes (eg, labs, insurance, clinic visits), and collaborating with clinicians on treatment decisions.
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Crohn’s disease and IBD patient self-management priorities in clinical practice include smoking cessation, attending scheduled monitoring visits, and maintaining ≥80% medication adherence, which clinicians estimate accounts for ~95% of disease-control behaviors. Additional supportive behaviors—adequate sleep, mental health management, exercise, and adoption of a healthy or Mediterranean-style diet—may further support disease control but require patient behavioral skills and confidence to implement consistently.
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Remote symptom monitoring and patient-reported outcomes (PROs) in IBD management, informed by prior telemedicine approaches such as TeleIBD, may support both clinician-driven treatment adjustments and improved patient self-efficacy. Evidence from randomized trials and meta-analyses in oncology shows remote symptom monitoring during chemotherapy improves quality of life and reduces healthcare overuse, suggesting a potential model for IBD programs currently being evaluated in implementation trials within the US Veterans Affairs health system.
TRANSCRIPT
Welcome everyone to IBD Drive Time. I'm Raymond Cross from Mercy Medical Center in Baltimore, and I'm delighted to have Shirley Cohen Mekelburg from University of Michigan here to talk about self-management in IBD. Shirley, welcome to IBD Drive Time.
Dr Cohen-Mekelburg:
Thanks, Ray. I'm excited to be here.
Dr Cross:
So I think now in 2026, we know that managing patients with IBD is not only a collaboration between GI and other providers, but with patients as well. What does self-management and IBD mean? Is this as simple as having them take care of diet, health maintenance, sleep, and other things, or does it go beyond that?
Dr Cohen-Mekelburg:
So it's a good question. So let's start with the big picture. I think most patients and clinicians share similar goals for IBD care, which is what? To control patient's symptoms, to prevent complications, and to improve quality of life for patients. When it comes to people with active inflammatory bowel disease, our focus tends to be on prescribing medications to control inflammation. However, we know from our clinical practices that medication prescribing alone is not sufficient to achieve those goals.
So IBD is complex. Patients often take on much of the burden of managing the disease day-to-day between their visits. And we provide some support as clinicians beyond the prescribing of medications. Say, for example, giving education materials out, counseling patients on medication adherence or diet, referring them to a dietician or a GI psychologist when it's needed, but there really is no standard approach. We don't really have standardized resources or tools to routinely help us support patients between our clinic visits.
So self-management, as I see it, refers to the daily behaviors that patients need to perform to keep their illness under control and to minimize its impact on both their physical and their psychological health. And so to me, this includes both the behavioral skills that people need to learn, such as recognizing and handling their symptoms, managing their medications, collaborating with their clinicians on treatment choices, and then navigating the healthcare system. So think about getting labs when they're due or navigating insurance coverage. But beyond just behavioral skills, there's this psychosocial capacity of doing those skills. So people need to understand the course of their IBD and also they have to have a certain level of confidence in managing their disease and actually performing those skills. And there's a lot of data out there showing that self-management is critical to improving IBD health, including some of the work that we've done.
Dr Cross:
So when patients come into the office to see me, they often ask about a number of different things they can do to help with their IBD. And well, let's just say this is a Crohn's patient, to make it simple. I usually tell them the 3 most important things for me from my perspective is don't smoke or stop smoking. Come for your scheduled monitoring visits and take your meds 80% of the time. If you do that, that covers 95%. So self-management's incorporated in that. That's all part of that core to be able to do those things. And then the other things that I tell them is the 5% is sleep well, manage mental health, exercise, adopt a tasty and healthy diet or Mediterranean type diet, but they also need self-management skills to be able to do those things as well.
Dr Cohen-Mekelburg:
Definitely. And I think that's great that you incorporate that into your clinical practice. I have done that more and more as well, but telling somebody to do something and then actually having patients be able to go out and do that well sometimes is discordant. And so probably similarly to me, you have experience with these patients—some people come in, they have experience with their disease, they're confident, and they can go ahead and learn about the disease on their own. They've figured out how to monitor their symptoms. They know their triggers. They can have pretty complex conversations about their medications with you, while others end up having much more difficulty doing those things and you wish you can help them, but there's only so much that we can offer beyond counseling.
Dr Cross:
And I'm smiling and starting to laugh because the first scenario you gave, some patients are like that for sure, but some of the information they have is wrong and you're trying to unravel that. But coming back to self-management, what resources and or skill sets do the patients need to be able to practice self-management?
Dr Cohen-Mekelburg:
So we actually looked at answering this question as part of my NIH K23. And so to answer this question, we did some qualitative work, both at the university as well as within the national VA system. And the reason we picked both of these sites was we wanted to increase transferability of the study findings. We didn't want this to be information that was only relevant to a large academic center. And so we interviewed 30 patients with IBD at each site, and we found that first, there are several key skills required for living and dealing with IBD. And so when you ask patients, how do you deal? What do you do day-to-day? What are your workarounds? You really hear the same themes, which is people are really focusing on recognizing and managing their symptoms, on selecting and adhering to a medication regimen, on adapting their diet in order to avoid triggers, navigating healthcare, which includes kind of clinic visits, phone calls, insurance—how do you handle all that and work around the challenges, and then coping with unpredictability of the flares.
And beyond just the skills that people needed through our conversations, we found that it was really important to support positive patient perceptions and really patient confidence in dealing with the IBD. And what's interesting is one person may be more confident than another at baseline, but then whenever people's symptoms flare, even the person who's the most confident, they begin to question that when things are not going well. And then in addition to that, we see that social support was very important to patient success, as well as being able to cope with their stress and anxiety and comorbid depression. And so I'm sure each of us have a few examples that we can think of in our clinical practice, but let's say you take a person with a new diagnosis of IBD, not only do they have to cope with the new chronic diagnosis, but they also have this disability that comes with their current symptoms.
We can give them some education, counseling on their initial visit, but then we kind of send them off and say, "Here, take some meds, figure it out. " And again, some people are more adept and some are less, but it would be nice to have a toolkit or an intervention that we could give people. And so to me, that really is kind of a clear gap that needs some filling.
Dr Cross:
So what I heard distinctly, and maybe I hope I got this right, is when a patient is exhibiting positive behaviors in regards to self-management as provider, it's very important for me to reinforce that positive behavior.
Dr Cohen-Mekelburg:
I think clinician reinforcement is one piece of that. How can you motivate patients to continue to doing what they're doing? How can we actually give them feedback on their performance to either have them promote performance of the positive things people are doing or actually change people's performance in cases where maybe they need a little help or they need to do a better job, or maybe they need to change the way they're thinking about things.
Dr Cross:
So are there any thinking about demographic characteristics? I was thinking about higher socioeconomic status, maybe higher education. I'm thinking maybe more middle age as opposed to extremes of age and perhaps female gender being predictors of better self-management. Is that accurate? I'm sure it's highly variable. I'm sure you can be lower socioeconomic status and lower education, but still be able to self-manage. But in general, are there some predictors of people that struggle with this?
Dr Cohen-Mekelburg:
Yeah. So in the study itself, we actually purposefully sampled people of different age groups. So the younger population, the older population, and the middle. And actually there were really not huge differences. Different age groups wanted information out there that was more tailored to their situation. So whereas a 20-year-old wants help understanding how am I going to make it to prom— or maybe not a 20-year-old, an 18-year-old—a 70-year-old has questions around, how am I going to transition to Medicaid or Medicare, or what do I do as I get older if I need surgery? And so there's some tailoring needed, but we found that a lot of the behaviors and self-management support that people wanted was actually quite similar.
And then we also looked at disease duration, the folks who were just diagnosed versus the folks who've had experience. I would say for my clinical practice, as people have more and more years of experience with a disease, they figure a few things out. They understand their triggers a little bit better. They start to understand what will happen if they're not adherent to their medications. And so there are subtle differences, I would say, with level of experience, but again, I think there's variation, but we've not specifically found differences by educational status, for example.
Dr Cross:
Do support groups like those local support groups, those arranged by Crohn's and Colitis Foundation or other patient advocacy groups, apps, things like that, do any of those help with in gaining self-management skills?
Dr Cohen-Mekelburg:
I think for some patients, that wasn't something we've specifically asked, but social support itself is very interesting because social support can mean different things. So in the simplest terms, it could be someone to go to for advice, or it can actually mean tangential support, like who's driving me to my clinic appointment or who's driving me to my colonoscopy. But social support can also just be someone to listen to you or someone to provide empathy.
So we actually recently published a study where we did a qualitative analysis of Reddit data to really try to understand what are people with IBD going to social media for. And what was really interesting is when you do an interview, it's a one-sided conversation. But when you look at something like Reddit, you actually see kind of two-way interaction, what people are posting, and then the interaction with other people on Reddit and what they're actually replying to that person.
And so it was interesting to see people really went on these platforms for really seeking advice, seeking empathy, seeking encouragement. And I think we are worried initially that there'd be a lot of bogus things being said on these sites, but actually a lot of the replies were very meaningful and patients actually encouraged other patients to talk to their doctor, to follow through on their treatment plans, and actually patients would come back to Reddit after their experiences to thank the crowd. And so I just think there's different aspects of self-management and social support. Things such as support groups or apps, they maybe provide a little bit of that match, but just because you match people doesn't mean that there are certain conversations that let's say are being encouraged. And so there's decent data to suggest that social support is important, but I think definitely could be more work done to further push that forward.
Dr Cross:
And for those practices, centers that have multidisciplinary care, which is going to include a nurse navigator, nurse educator, a mental health professional, a dietician, that can be a source of social support for our patients as well. It doesn't have to come from family members and friends, but it can be our staff that's a support system for them.
Dr Dr Cohen-Mekelburg: Definitely.
Dr Cross:
Before we finish up with a few more questions, I want to remind the listeners that IBD Drive Time is the official podcast of the AIBD network. Speaking of AIBD, we have our first regional AIBD, which I'm cochairing with Tina Ha in Cincinnati, April 18th and April 19th. So you're going to see information about that shortly. So if you're in that area or if you're from other areas and want to come to the beautiful city of Cincinnati, which is indeed beautiful, please join us in Cincinnati. And remember that we are on Spotify and Apple Podcast, so you can look for us there when you put in IBD Drive Time and AIBD Network.
So Shirley, when I was more of a researcher at University of Maryland and less of a clinician, well, I was still a clinician too, but doing research on remote management, we were interested in telemedicine and remote monitoring, but we included in those studies patients' ability to initiate treatment early based on their responses to our PROs. And we did things in a traffic light system where green light, you were doing great, yellow was mild to moderate, red was moderate to severe, and we would give them specific actions. And it was a bit of a challenge to do that, but I would imagine it takes a specific skillset with self-management to be able to do things like that.
Dr Cohen-Mekelburg:
So I think first, I think those initial studies that you did are great. They actually really informed a lot of the work that I am currently doing and hope to do, and I would say really pushed me to do this in my career. So thank you. But also, so I thinking about the context of some of the major categories of self-management behaviors, self-management can mean tracking like your symptoms, diet, stress, activity. I think this is where some of that work that you did fits into here, where for example, small medication dosing changes can come in. But again, there's different aspects. So a lot of studies have focused instead when they talk about self-management on medication adherence, for example. But self-management can also mean how do you handle stress and focusing on stress management. It can focus on preparing for a conversation with your doctor. It can focus on how do you elicit social support or how do you navigate insurance issues, for example.
And so I think I love the work that you did, and I think like you're saying, it's sort of on the verge of what you would call remote monitoring plus or minus self-management, which is related, but I think there's so many different aspects of self-management that could be targeted.
Dr Cross:
Yeah, I think I didn't think that through properly. And we were extrapolating from some other chronic disease models like asthma, where self-management is critically important with inhalers and things like that. And diabetes, of course, is a big one. Although now with some of these really incredible monitors, it does a lot of that adjustment for the patient, but they still have to be engaged. And I think if I recreated those studies, what I would do would focus more on recognition of symptoms that are indicative of flares. We were tracking adherence and doing things like that, but even early diagnostic testing maybe as opposed to initiating treatment, like getting that information back more quickly. I think that probably, particularly now that we have all these therapies and which therapy you're going to use is now more complicated, I think that would've probably been a better approach. Any remote monitoring systems out there available for patients that are helpful for monitoring their IBD, linking them to mental health support and other skills to help improve self-management? Any that you like in particular?
Dr Cohen-Mekelburg:
So I think I would say not anything in particular. To me, remote monitoring is very interesting because when we talk about self-management and self-management support, we actually are putting a lot of the burden of care between visits on patients. They're the ones who have to deal with self-management. And so by thinking about remote monitoring, I feel like we can actually shift some of that burden away from patients and back to the care team. How does the care team interact with patients between visits?
And so remote monitoring is a term that kind of gets thrown around a lot. It can refer to monitoring symptoms, it can refer to biometrics like heart rate or physical activity, it can mean monitoring biomarkers like fecal calprotectin. Now we have some folks studying the smart toilets that can detect calprotectin. To me, what's really interesting is to start from the beginning and really think about symptom monitoring, which I believe is a lot of what you guys were doing with the TeleIBD study. So what's interesting, like you were talking about diabetes and asthma, a lot of the self-management data comes from those fields. And I think in IBD, we can learn from that. When it comes to remote symptom monitoring, there's a very strong body of literature from the cancer care world. So for remote symptom monitoring and cancer care has been shown over several randomized controlled studies and med analyses to actually improve quality of life and reduce healthcare overuse for patients who are undergoing chemotherapy.
And what's interesting is that the mechanism of the intervention effect is both by clinician-driven timely treatment adjustments, but it also works by promoting self-efficacy for patients. So really their confidence in recognizing and managing their symptoms. And so you can see how that could potentially be extended to patients with IBD. And within the cancer care world, remote symptom monitoring is now being reimbursed as part of some of the CMS programs. And so to me, this is very interesting because I think it complements self-management very well.
In our group, actually building off of your work, we currently are in the process of conducting a effectiveness implementation trial of remote symptom monitoring for patients with inflammatory bowel disease. And so the goal is really to test the effect on health outcomes, but also to work towards overcoming implementation barriers. And this study is particularly happening in the VA system where it could be very helpful for population health management.
Dr Cross:
Yeah, that's super interesting. And I never could quite figure out exactly what the sweet spot was as far as how often patients should be answering questions about symptoms and other PROs. In our big AHRQ-funded study, we were doing weekly versus every other week, and there wasn't a big difference between that. Importantly, the patients weren't more likely to do weekly or every other week, so I haven't really figured that out. And then as far as clinical implementation, I think Michigan has been much more adept at integrating this into their electronic record. But one of the things that always concerned me is we already have so much information overload in our Epic inboxes. And now at least there's a mechanism to reimburse for remote monitoring, which I haven't tried yet, but I think that sweet spot of how often do you send these and who's going to be reviewing those and where's the tipping point? It should be, Malcolm Gladwell should write a book about this. I think you would figure it out probably.
Dr Cohen-Mekelburg:
Yeah. Yeah. It's interesting. I'm curious if you remember what your percent adherence was. From some studies outside of IBD, people are always worried about adherence, but patients seem to be pretty adherent with these weekly or biweekly check-ins. And yeah, I mean, I think what you're discussing is this balance between burden and effect. And I think that is probably the next million dollar question in this world.
Dr Cross:
Yeah. The most recent one we did, which was the Crohn's and Colitis Foundation study, our overall adherence to medications was under 80%, but there were some limitations in our ability to get refill data to calculate a medication possession ratio. Looking at their self-reported adherence on the MARS-5 it was incredible. It was very, very high. So their perception was quite good, but the actuality wasn't as good. And the compliance adherence with the, I can't remember from TeleIBD, but I think it was over 80% or around 80% did the monitoring questions, which was pretty good. I mean, we were pretty happy with that. I think we got it found a reasonable sweet spot.
Okay, time for the fun question. So Shirley, tell me, what's your fun fact? Tell me something about you that I wouldn't know, maybe members of the audience wouldn't know.
Dr Cohen-Mekelburg:
So I would say I'm big into cooking for people. So any excuse for a feast, whether it's university tailgates or birthday parties or random Sunday dinner. Usually when I'm not working, I'm kind of working hard in the kitchen making food for folks. And if anyone's ever in Ann Arbor, you're all welcome to our tailgate.
Dr Cross:
That's fun. All right, Shirley, this has been great. We hope we have you back for another visit and reminding the listeners that this was IBD Drive Time, the official podcast of the ABD Network. Shirley, thank you very much.
