Severity vs Activity in IBD

Marita Kametas, MSN, APN, continues her tutorial on IBD with a review of the disease severity and disease activity, including how they differ and how they can be assessed.

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TRANSCRIPT:

Hi, my name is Marita Kametas, nurse practitioner and ostomy specialist at University of Chicago Medicine and the Inflammatory Bowel Disease Center. Today we're going to be looking at disease activity versus disease severity.

Disease activity is the patient presentation in front of you. Current inflammatory burden, current symptom burden, objective and subjective assessments of current activity. This is the amalgamation of the subjective and the objective presentation of your patient.

Disease severity is entailed with the historical disease behavior, need for surgery, extent of bowel involvement, and complications. So please do not be dismissive of disease severity based on current activity. Knowing what brought your patient to today is inherent to protecting them from complications in the future.

So I often will say to my patients when they come into the office, "What brought you to today? How old were you when you were diagnosed? Do you remember the amount of bowel that was involved and how has that changed to today?"

Looking at disease behavior, this means the behavior of disease during pregnancy. This means the phenotypic behavior, a stricturing or penetrative disease, looking at concomitant inflammatory conditions such as rheumatoid arthritis, and psoriasis and psoriatic arthritis, looking at previous treatment exposure and the response to those previous treatments, looking at the presence of extraintestinal manifestations during the current office visit, but also over time and how those line up with GI symptoms for the patient, looking at the need for past surgeries and how extensive those surgeries were, history of nutritional deficiencies. This can sometimes point us towards how much small bowel has been removed if we don't have those surgical reports in front of us and can help us take better care of our patients. And looking at historical disease behavior versus today. So if a patient comes in and they say today is a great day, I've had 3 bowel movements, I was able to get out of the house before 8 am with those clustered bowel movements, but this is a very unusual day for me.

Please don't take this as a reason to say, "Oh, things are getting better." We want to make sure that we're looking at an all-encompassing picture, and though we love our patients to have great days on the days they're coming in to see us, make sure that it's actually characteristic of what's going on at home.

So looking at the consequences of recurrent inflammatory activity, so we know inflammation over time can lead to consequences, and so what does that look like? A patient at diagnosis has a certain level of inflammation. We try to quell that inflammation and make their disease as quiescent as possible. Subsequent flares can develop and those flares can result in structural damage such as stricturing and fistulizing disease and it puts stress on the cells and this can cause bowel dysfunction leading to malabsorption, some of those vitamin deficiencies I previously mentioned, as well as the stress from inflammation on the cells can cause the development of dysplasia which can progress into colon cancer, perforation, need for resection or of colectomy.

So looking at ulcerative colitis disease extent. Pancolitis is disease extending proximal to the splenic flexure or beyond 60 centimeters from the anal verge. Left-sided colitis is defined as disease that extends beyond the sigmoid colon or up to 60 centimeters from the anal verge. And proctitis is disease that's limited to the rectum or 15 to 20 centimeters from the anal verge.

It's important to know the disease extent because it can guide some of our treatment strategies. Looking at disease severity—so we do a combination of many things to define disease severity in ulcerative colitis. So typically you'll see this strategized out into mild, moderate, and severe. And as you can see here, these distributions are made based on Mayo score, based on disease extent, risks, including age, comorbid conditions, concomitant issues like anemia resultant from inadequate absorption from inflammation or active rectal bleeding, and extraintestinal manifestations.

Another important distinguishing feature is corticosteroid use. So is a patient responsive strictly to rectal steroids or budesonide or are they a patient that's requiring hospitalization for IV steroids?

Looking at the disease severity distribution in many of our practices we may see predominantly one of these categories but looking kind of nationally, 2% of patients are categorized as severe, 20% moderate, 30% mild, and 48% in remission. So though 48% is a great number for those patients, we certainly have a lot of work to do in order to optimize our patients and our strategies to make that number a bit larger.

So looking at the Simple Clinical Colitis Activity Index, this is a great way to triage your patients. This is a nice objective marker to use in each clinic visit, so that way you can compare last visit to this visit and what's changed. And so the way to do that is through an interview. You ask the daytime bowel movement frequency. Are they waking up at night purely to have a bowel movement? Are they having a bowel movement while they're already waking up for some other reason? Do they have urgency to defecate in talking about how urgent that need is? Looking at the presence of blood in the stool, whether it's mixed in the stool, whether it's only on the toilet paper, that can help distinguish clinical factors. Looking at their general well-being, how are they operating in their life outside of the bathroom? Are they able to get to all the things that they want to, or are their symptoms slowing them down? And looking as well at extracolonic features, including those extraintestinal manifestations.

The higher the score, the more active the disease. So it's important to take a really, really clean history with these patients and really drill down where they were at the last visit, where they are today, and where are the opportunities for optimization, and also looking as well at is this a patient that may have a functional issue on top of an inflammatory issue? So comparing this data with the objective data really helps guide their clinical course.

Looking at Crohn's disease and the disease extent. So as I mentioned, it can affect anywhere in the gastrointestinal tract, so the interview for a patient with Crohn's disease might look a little bit different than one with a patient with ulcerative colitis. It's progressive in nature, and perianal disease can occur in about a quarter of patients at some point in their disease process. And stricturing and visualizing disease may be present as I mentioned.

The cartoon in the middle here identifies, you know, a healthy lumen, and looking at what does that look like with inflammation? It can feel narrow. Patients may develop obstructive symptoms, but is that obstructive set of symptoms responsive to steroids? That may indicate to you that they have active inflammation, but perhaps don't have structural damage yet.

A patient that develops a stricture may require a surgical operation in order to help alleviate the backflow from that stricture that's causing recurrent obstructive symptoms if it's not responsive to steroids.

Looking at fistulas, as I mentioned, that's a connection between two things that should not be connected. We often see those from one loop of bowel to another or from the colon to the small bowel, but we also can see them occur in patients that have rectovaginal fistulas, fistulas that infiltrate the bladder, and fistulas that actually extend upwards to the skin. So it's important to have a really all-encompassing assessment of these patients when you see them because the risk factors with fistulas include hospitalization as well as severe nutritional deficiency. So we really have to always have our thinking cap on with these patients.

Looking at the cartoon to the right, this is a depiction of perianal disease and some of the things that can happen to the perianal area of patients with Crohn's. So as you'll see here, there's a nice little depiction of perianal abscess, which is a closed pocket of infected fluid. Patients often present feeling very unwell when this happens. They'll feel pain, they'll feel pressure, they may be febrile, and oftentimes those drain through fistulas, so those connections that shouldn't be there that I mentioned.

They often extend out from the skin and they can cross many different structures. Fistulas are complex in nature and the anatomy of the fistula tells you a lot about the opportunities for improving these fistulas for these patients, both medically and surgically.

So you'll see here in the fistula tract to the left of the cartoon that there is something called a seton. So that's a small loop that goes through the tract of the fistula and helps the drainage come out so that way an abscess doesn't develop. Over time these tracks can shorten and can be greatly improved by doing things like Sitz baths or potentially using antibiotics.

This is a great opportunity to involve a very skilled colorectal surgery colleague. It's important that you have a patient see a surgical colleague that has extensive IBD experience and sees patients with Crohn's disease often because especially when these fistulas can cross the sphincteric muscles, they are at risk for future incontinence if they aren't dealt with appropriately.

So looking at disease location and nutritional implications. In my clinical practice, I do a comprehensive vitamin assessment based on disease location, at least annually. And for patients that it's indicated based on bowel resection or prior deficiencies, sometimes more frequently. So you'll see here through the esophagus, the stomach, the duodenum, the jejunum, the ileum and the large intestine, which items are absorbed in these areas. And it's important to know this. It's important for our patients to know where their disease is. The first thing that I ask a patient is, do you know where your Crohn's disease is located? Because it helps them gain agency to be able to advocate for testing and to be able to have the knowledge, say they show up in an emergency room somewhere outside of your institution, they're able to say what's going on with them and it helps those providers provide a higher level of care for them. So it's important to identify this and to test these levels that they are vulnerable for deficiency in.

So looking at Crohn's disease activity, we define this through the Harvey Bradshaw Index in my institution, but in other institutions, they also use the Crohn's Disease Activity Index, and this goes over some of those objective markers as well as the subjective assessment of your patient. So patient well-being and abdominal pain is across the board in both of these indexes. Number of liquid or soft stools from the previous day or within the last week is important to know for our patients, and it's important to know the acuity of onset of liquid stools so you can sort of help delineate between is this active Crohn's disease or is there potentially an infectious component to this set of symptoms?

Looking at an abdominal mass as well as presence of extraintestinal manifestations, the Crohn's disease activity index goes a few steps further and talk about the use of lomotil or opiates as an antidiarrheal. So do we have patients that may think that their inflammation is under control because they're treating their diarrhea functionally? And so we don't have the opportunity to identify these symptoms, looking as well at the hematocrit and body weight.

Continue this tutorial here, with information on patient triage and treatment.