More than 1.4 million Americans suffer from irritable bowel disease (IBD). Of these, 25 percent are children. There are two main types of IBD that people typically think about: Crohn's Disease and Ulcerative Colitis.

The difference between the two is dependent upon where in the body the disease occurs. Crohn's Disease can affect essentially anywhere along the digestive tract, whereas Ulcerative Colitis generally affects the lining of the large intestine. Another determining factor is how deep the disease goes into the tissue. With Crohn's Disease , the disease goes all the way through the tissue. Ulcerative Colitis affects just the lining of the large intestine.

Doctors are still learning about what exactly causes and triggers irritable bowel disease, and what populations are more prone to having the condition. Right now, though, there is no known cure. Patients with IBD will likely require a lifetime of medical care.

IBD occurs because a person’s immune system has a consistent over-response to bacteria – good and bad – in the body. In a person without IBD, the immune system reacts to bad bacteria by attacking it. When the bad bacteria has been taken care of, the immune system relaxes. In a person with IBD, however, the immune system doesn’t know when to stop attacking. This leads to flare-ups and complications.

Listen in as Dr. Wallace Crandall, Director of the Center for Pediatric and Adolescent Inflammatory Bowel Disease at Nationwide, talks more about living with irritable bowel disease. Dr. Crandall also leads a team that helped to start the ImproveCareNow Network. ImproveCareNow Network is a collaborative made up of about 30 healthcare sites around the country that collect and share data about IBD trends and treatments. This shared knowledge is then used to provide the best treatment to IBD patients, nation-wide.

Since Nationwide Children’s started participating in the ImproveCareNow Network collaborative about four years ago, remission rates for our patients increased from 50 percent to 80 percent without any new treatments – that’s a statistic to be proud of!

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Dr. Wallace Crandall: What's exciting about the work that we're doing is that it's working when we began this collaborative a few years ago. Our remission rate was about 50%. We've increased remission rate from 50% to about 80% just within the last four years without any new treatments being developed during that time, just by being more reliable on the care that we provide.

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Dr. Rick McClead: That was Dr. Wallace Crandall Crandall, Pediatric Gastroenterologist at Nationwide Children's Hospital discussing some of the great results he and his colleagues are getting as they help children with IBD or Inflammatory Bowel Disease.

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IBD is one of the most prevalent gastrointestinal diseases in the United States. He had estimated that more than 1.4 million Americans suffer from IBD and 25% of these patients are children. IBD is without a medical cure and most likely will require a lifetime of medical care, but we can improve the quality of these children's lives now.

IBD and the ImproveCareNow Collaborative next on Children's on Quality.

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Dr. Rick McClead: Welcome to Children's on Quality. This is your host Dr. Rick McClead McClead, Medical Director for Quality Improvement Services at Nationwide Children's Hospital.

With me to discuss Inflammatory Bowel Disease and the ImproveCareNow Collaborative is Dr. Wallace Crandall Crandall, Professor of Clinical Pediatrics in the Division of Pediatric Gastroenterology at Nationwide Children's Hospital and my Associate Medical director for Quality Improvement Services.

Wallace, welcome to Children's on Quality.

Dr. Wallace Crandall: Thanks for having me.

Dr. Rick McClead: Before we get into the details of the exciting work of the ImproveCareNow Network, let's help our listener's with a little background of Inflammatory Bowel Disease. What is IBD?

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Dr. Wallace Crandall: So IBD – there's two types that people usually think about. One's called Crohn's Disease, the other's called Ulcerative Colitis. And they really differ by what part of the intestine is involved. So Crohn's Disease can affect really any place from the mouth all the way through the anus. Whereas Ulcerative Colitis is just the large intestine typically. And it also differs by how deep the intestine's involved. So, with Ulcerative Colitis it's just the very inner lining of the intestine whereas with Crohn's Disease, it can sort of go all the way through the intestine.

And these are basically disorders that are caused by the immune system being out of control. As an example if you ate a bad sandwich or a bad lunch and you got food poisoning, you got a bacteria from that – your immunes system would turn itself on, kill off the bacteria and then turn itself it off again. The people with these disorders, their immune system doesn't know when to turn itself off the way that it should. So it kind of stays revved up when it shouldn't be. It thinks that there are some bacteria or something in there that it needs to kill and there really isn't anything.

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Dr. Rick McClead: Are they really part of one spectrum of disease from one end to the other or are these two distinct diseases?

Dr. Wallace Crandall: Well, nobody knows for sure. They're probably two distinct diseases, but really there's probably 30 or 40 different diseases. There's probably lots of different causes of Crohn's Disease with therefore probably different treatments and there's probably lots of different types of Ulcerative Colitis as well. So the ones that kind of look the same as an end result – we lumped together as Crohn's and one's that look the same as an end result – we lumped together as Ulcerative Colitis. But there's probably lots of different types.

Dr. Rick McClead: And why does the immune system do this?

Dr. Wallace Crandall: Yeah, so nobody knows exactly. The way that we think about it is that it's an overlap of your genetic predisposition and the environment that you live in and the way that your immune system reacts to those two factors.

We know that there are close to 200 genes now that are associated with Crohn's and Colitis.

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A decade ago, 15 years ago we knew about one gene and now we know about close to 200. So there's lots of genes that are involved. We know that there's some environmental factors; infections and antibiotic use may be involved and smoking and things like that. So, those things all go into play. And then some people's immune system based on those factors just get out of control like we were talking about.

Dr. Rick McClead: Are these conditions similar to other autoimmune disease or are they related in some way?

Dr. Wallace Crandall: There probably is some relationship there. For example, rheumatoid arthritis – a lot of what we've learned about treating Crohn's Disease over the years are what they've been doing to treat rheumatoid arthritis for some time. So their use of Methotrexate, their use of Remicade, Humira those kinds of medications has generally been years in advance of what we've been doing but with very similar types of outcomes and mechanisms of that working.

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Dr. Rick McClead: Is anybody prone to do this or there are certain populations a patient is more likely to have these Inflammatory Bowel Diseases?

Dr. Wallace Crandall: Yeah. So, Caucasians are more likely to have it than African-Americans and people of Mexican descent. It also varies a little bit by sub type, I mentioned that there's probably lots of different kinds of Crohn's for example. So African-Americans for example may be more predisposed to having certain complications that can be associated with Crohn's Disease.

Having said that though, it may be more important where you live than what your race or ethnicity is. Some of those differences that we see actually all sort of come back together and everybody has a similar kind of risk if they've been raised in a similar type of environment. So being in a more urban setting increases your risk; certain countries – the more industrialized the countries are, the more likely you are to have Crohn's and Colitis. And in fact some places – some of the poorer countries really don't have much in the way of Crohn's and Colitis.

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Dr. Rick McClead: Do we see people coming from areas of the world that have a less common incidents of these disorders? If they come to the United States and they live in this sometimes crazy world that we live in – in this part of the world, can they develop these conditions then?

Dr. Wallace Crandall: They can and actually their risk starts looking a lot more like everybody else's risk who lives in that area once they've been there for a while.

Dr. Rick McClead: So there's really this lifestyle that we have in United States that in some way contributing to it?

Dr. Wallace Crandall: Yeah and there's actually a lot of diseases where the immune system's sort of overactive that increase in prevalence when you live in an industrialized society. One of the theories – nobody knows for sure, but one of the theories is this so called "Hygiene Hypothesis." So if you live in an environment that's too clean as you're growing up you don't get exposed to the parasites and the infections and different things when you're younger that your immune system doesn't become tolerant of those things. And so then when you get exposed to them later on in life, your immune system doesn't know that it's OK, don't worry about it and that's the reason that the immune system overreacts.

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Dr. Rick McClead: What it's like for a family of a child that has IBD?

Dr. Wallace Crandall: IN the beginning it can be pretty overwhelming for them. It's very scary kind of thing to be told that you have a chronic illness; we don't have a cure for it. They've experienced some of the symptoms that go along with that and the symptoms can be pretty disruptive; abdominal pain, bleeding, impaired growth, poor nutrition – things like that. So it can be a pretty big deal and it can be pretty scary and overwhelming.

Having said that, we're getting pretty good with treatment of Inflammatory Bowel Disease. So if you look at our patients as a whole, over 80% of them are in remission at any given time. So basically not having symptoms, not having side effects, not having complications – they're living a normal life.

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Dr. Rick McClead: And that's all because of the ImproveCareNow Network Collaborative?

Dr. Wallace Crandall: Well it's certainly helping. The ImproveCareNow Network – when we first started with ImproveCareNow, the remission rate at Nationwide Children's was about 50% and that was about average for everybody else that was doing this. Our remission rate now ranges between about 80 and 83, 84%, so a very dramatic change. But what're really dramatic about it is we haven't introduced any new therapies during this time. So it's not that we had some new drug, we've just been better about delivering care to people.

Dr. Rick McClead: Doing what you know to do and doing it correctly every time?

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Dr. Wallace Crandall: Yup, yup.

Dr. Rick McClead: That sounds like quality improvement.

Dr. Wallace Crandall: That's quality improvement.

Dr. Rick McClead: How do the ImproveCareNow Network Collaborative get started. You were part of that original group, tell us about that.

Dr. Wallace Crandall: Yeah. So there were six or seven groups who got together. Dick Colletti and Peter Margolis were the couple of the people who sort of have this idea and they recruited a small group of centers to start working together in figuring out how we might start improving outcomes for kids. And so we had some principals of quality improvement but we didn't know the specifics exactly of how we were going to approach this.

And it's just been kind of an iterative process over the last few years of defining what our goals should be and what factors are going to most influence those calls and how we can intervene in those factors and just sort of doing that repeatedly. We've changed what our goals are over time, we've changed some of our interventions over time and we've become much more sophisticated about the way that we're doing things. And as we've done that, we can see a pretty steady rise in remission rates over the last four or five years.

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Dr. Rick McClead: Well, what does that mean for these families from a quality of life standpoint? As far as you got them in remission, how are their lives better?

Dr: Wallace: It's huge actually. When somebody has active Crohn's or Colitis, their life can revolve around their disease and their symptoms. You can imagine if you had stomach flu kinds of symptoms all of the time, your life would revolve around "Where is the restroom?" "What's going to happen if I get sick?" What's going to happen if I need to run to the restroom?" It interferes with them going to school, it interferes with them doing things with their friends, it interferes with them socializing normally – so, a huge effect on their life.

And when you can control all of those symptoms then they can start having confidence being in school all the time and doing things with their friends and socializing and all of that. So it makes a huge difference for families.

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Dr. Rick McClead: They can go on remission but that can go the wrong way at any particular time?

Dr. Wallace Crandall: Yeah, yeah. You can have flare-ups and there's not any way of predicting when those are going to happen.

Dr. Rick McClead: There are particular things that families should be watching for early?

Dr. Wallace Crandall: Yeah. Oftentimes it's the same symptoms that they had when they were first diagnosed, hopefully not of the same severity because now they kind of know what to watch for. So symptoms may differ between kids. Some kids may have a lot of diarrhea, some kids may have very, very little diarrhea depending on what part of their intestine is affected. And so we usually ask them –

A. To watch for the kinds of symptoms that got them diagnosed to begin with and

B. We tell them some specific kinds of alarm things to let us know about.

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So if they're having persistent fevers that aren't really explained or if they're having severe abdominal pain that's kind of outside of what they've experienced before, or if they're having vomiting that won't stop, or dizziness or lightheadedness that they've had with bleeding or lots of diarrhea. Those kinds of things we want them to tell us about right away.

Dr. Rick McClead: Well, I got on the ImproveCareNow Network and took a look at the materials that was available on the website, but one of the things that really I guess I wasn't surprised to see it is this handbook that you developed that along with some other investigators that are part of the collaborative. And I went through that handbook and I was just overwhelmed with the quality of the information you're providing the families – it presented in a way that makes it very interactive for them. So tell us how you see this handbook being utilized by the patients and their families.

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Dr. Wallace Crandall: There's a concept that I think is really important. We call it "Self Management." So if you really think about how you're taken care of or how you interact with your doctor, you see your doctor for 30 minutes every three months or something. So the time that your doctor is actually managing anything with your care is miniscule compared to all the time that you're doing it. So we think that it's really, really important for the kids and for their parents to understand what's going on and to know what they need to do and why they need to do that.

And then as the kids get older, they assume more and more responsibility for their care because they're going to off to college or whatever the case may be and mom's not there anymore to remind them to take their medicines and do these other things. So we developed a handbook and it's different than most of the resources out there.

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The majority of resources out there are primarily educational which is important; I don't mean to minimize that at all. Our handbook has some educational components to it but, it really talks more about expectations and behaviors. So each section starts with a little section called "What We Expect From You" and then a section on "What You Should Expect From Us." So we really kind of lay the framework there for how they should plan on taking care of themselves.

And then there's some informational pieces and a little tiny quiz kind of thing to make sure that they understood it. And probably the most important section is right at the end, it's what we call "Things To Do." And so for each topic that's covered, we ask them to then go and actually do things related to that. So if they're doing a section on Medications, we want them to actually call their pharmacy and do a refill or check on their medications.

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We want them to bring their bottles to the clinic and talk to us about what the different pills are and what they're for and that sort of thing. So we actually have them check those things off as they work through this and the idea isn't that this is like some massive homework assignment that you're supposed to do between their first visit and their last visit. It's really something that is designed for them to use over their entire time with us which may be several years. So that they're ready developmentally as they're moving in to adulthood to really assume care for themselves.

Because in general the way that pediatrics approaches medicine I think is a little bit different than the way that adult's approach medicine. And I think there's maybe a little bit more hand holding and stuff that goes on here and we don't know has prepared kids very well to make that transition. So that's a lot of the concept behind it.

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So we're a little bit different in our approach to somebody who's newly diagnosed in most places. We actually bring every newly diagnosed patient back to clinic and they spend half a day with us. They meet with our Nurse Educator, they meet with our Dietician, they meet with our doctor, they may or may not meet with a Psychologist or a Surgeon or other team members sort of as needed and we use that handbook as sort of the framework for the teaching that occurs in that initial half day.

So we try from the very beginning to set the expectation that we are here to help you but, you're a key part of this team. It's not, "I'm not going to fix this. I'm going to be a part of the team and you're going to be a very important part of team….

Dr. Rick McClead: As you well know we have lots of chronic diseases that we care for here at Children's Hospital and I think we have a variety of tools and things like that to help our families, but this is I think really unique. And I wonder if there might be an opportunity to use this as a model for some of our other chronic diseases? I don't know that we have anything quite like this other than for the intended population.

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Dr. Wallace Crandall: We haven't seen much like this either in IBD, other places, or in other diseases. I do think it's probably a little bit unique. The other thing that we've done with it and this will actually be available in the next couple of weeks here I think, but we've taken the paper self-management handbook and we got a small grant through our professional society to turn that into a web-based handbook. So they will be able to do all of the same content but it will be on the web for them.

Not as good as an app, but they're certainly more interested in electronic media rather than in print.

Dr. Rick McClead: Right. Yeah, yeah.

Dr. Wallace Crandall: But the other nice thing about that is it's going to be on a learning management platform. So we'll be able to track what areas the kids look at – how much time they spend in each section and what kinds of things they ignore. 'Cause what we've done so far is we've taken this handbook to a bunch of parents and kids and said, "Hey tell us what's important, what you like, what you don't like," -& and that's how we developed it.

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But there's always a certain amount of them trying to please us, I think. So this learning management system will actually tell us where they do go and where they don't go and then we'll be able to take that information and develop sort of Version 2. And I think the big difference with Version 2 that we're planning is instead of breaking it up by topic, we're going to break it up by developmental stage.

So there will be a component for kids who are at sort of this developmental stage. It may encompass sort of little pieces of all of the different topics. But rather than saying, "Here's what you need to know about surgery…" and then giving them that "Things To Do" list that may not be age appropriate for them, we think we'll probably reorganize it a little bit.

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Dr. Rick McClead: You know one of the buzzwords in quality as you well know is "Patient Centeredness." This whole approach is patient-centered.

Dr. Wallace Crandall: Absolutely. Absolutely. And that's true both at a central level and at a network level.

So at a central level, we actually have several parents who are part of our QI team. Our QI team meets once a week and our parents join us as often as they would like but basically once a month. And that meeting is their meeting. So they command, they tell us what they're working on, they tell us what they think we should be working on. And sometimes they tell us just some fascinating things that make us just realize how dumb we can be sometimes when we don't think about it from their perspective.

A very simple example would be, we screen for Vitamin D deficiency in these kids and when we're putting together our protocol we kind of looked at what other people were doing for Vitamin D replacement and we came up with this. And so if they're Vitamin D level is at a certain point then we give them once a week Vitamin D for five weeks. It sounded like a great plan, that's what everybody did.

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Our parents came back one day and said, "You know this is fine but our pharmacy will only give us four weeks at a time. So do we really need to do the fifth week? Because we get charged for a whole batch of pills again for the second time." And the five weeks versus four weeks had been fairly arbitrary so we were charging our patients twice as much as they needed to be charged for something we just had reminders on them.

Dr. Rick McClead: Did know, did not know.

Dr. Wallace Crandall: Didn't pay attention. So they've been huge and one of the things when they first joined with us, they had a very clear goal on what they thought the priority should be. And what they wanted to do was develop a mentoring program – a parent to parent mentoring program. They wanted somebody that they could talk to that had a real life view of what living with Crohn's or Colitis was all about.

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So our parents came in and developed a peer mentoring program and it was of significant interest not just to us, but also to the hospital. So that program is now been translated to a hospital-wide program it's called Connecting Families. So I think that's been sort of a very positive happening and a very good example of how the parents can really effect change not just within our small group but within an organization.

Dr. Rick McClead: We have this handbook; it's available free on the web?

Dr. Wallace Crandall: It's available free on the web.

Dr. Rick McClead: So I'm going to put a link in our blog to that. So that if listener's are interested in taking a look at this wonderful document, they can do that. I think it was about 140 pages or something.

Dr. Wallace Crandall: I don't remember that it's…

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Dr. Rick McClead: OK. All right.

Dr. Wallace Crandall: I should just mention, the parent representatives that I was talking about, one of them has become sort of so engaged and turned influential in the community that she's actually the parent leader for the parent group at a national level.

Dr. Rick McClead: Wow.

Dr. Wallace Crandall: So a lot of the things that we do and develop here, she actually can then take to other centers and say, "Here's something that we're working on, you may want to think about it." And likewise, other ideas that are out there because she has that national connection she could bring it back to us.

Dr. Rick McClead: She'd bring aback. OK. Well that handbook is a lot as you said about kind of making it clear to families what's expected of them, what's expected of the doctors and the staff etcetera. What is involved in monitoring a patient that has IBD? Let's say you get them into remission, what's involved in the keeping on top of things?

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Dr. Wallace Crandall: Yeah. So like we alluded to earlier, we really want to know when their symptoms start changing. And we want to know fairly early because it's a lot easier to kind of intervene in the beginning than let somebody get really sick again. So just on a routine basis, we see them back regularly; it depends on what medications they're on. But anywhere from every eight weeks to every six months most people come back about every three months or so.

With those visits there's some blood testing that needs to be done. So they get their blood drawn pretty much every time they come to see us. You know it's not a lot of fun but most of them put up with that pretty well. Occasionally, we also have to do a colonoscopy or something with them again, but that's actually not a terribly frequent thing. So we have to do that if they're having symptoms that we kind of need to sort out. And then the other thing would be, once people have had Crohn's or Colitis for about eight to ten years then we start doing sort of more regular endoscopy and colonoscopy with them just to make sure for cancer surveillance and that kind of thing.

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Dr. Rick McClead: One of the interesting things that was in one of the chapters of the handbook was the whole concept of a "Pill Cam." I thought that was interesting. Tell our listeners about that.

Dr. Wallace Crandall: So Pill Cam is some very interesting technology. Your small intestine is about 20 feet long and with the sculpts reach the first couple of inches of the small intestine, the last couple inches of the small intestine – they can't see the rest of it. So we do different kinds of x-ray tests and stuff trying to look at that but sometimes it doesn't give us quite the view that we need. And so the Pill Cam – it looks like a giant vitamin as far as the size and it's got a little camera implanted in the end of it. You swallow it or we can put it down with a scope and then it just sits and flashes every second or so all the way through your small intestine. It what's make the video tape of the inside of your small intestine. And then there are some tools that are sort of built-in to that technology that allow us to sort of review than a little faster than it's going through in real time. It may be in there for six or eight hours but we can over an hour or so kind of review all of those images and look to see whether there's active disease or narrowing or other things that would be of concern and like change the way that we were doing the management.

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Dr. Rick McClead: And how's the video sent?

Dr. Wallace Crandall: So there is a recorder. So the sticky things that you put on your chest to get an EKG done – similar kinds of pads, they wore a little harness that has a recorder on it and it's just transmitted out to the recorder. The recorder just download it and the pill just passes through your intestine.

Dr. Rick McClead: So it's like a little radio transmitter?

Dr. Wallace Crandall: A little radio transmitter.

Dr. Rick McClead: Fascinating. Well, what about specific treatments? Let's say we have a flare and somebody's starting to just show early signs of these symptoms again, what had been the treatments I might have used initially? You know maybe the less complicated ones or potentially complicated therapies, but I now need to escalate a little bit. What's the progression of therapy for a patient?

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Dr. Wallace Crandall: When we first diagnose somebody with Crohn's or Colitis, we talk to them about sort of our approach to therapy and there's really two parts to it. There's what we call Induction Therapy which is "I'm sick, now make me better." And there's Maintenance Therapy which means "I'm fine now. How do we keep that way?"

So when we're assigning medicines in the beginning and adjusting them as we go along, we're really talking about two groups of therapy. Options in the beginning for, and there's a little bit of difference between Crohn's and Colitis. But in the beginning for Crohn's Disease, it's often steroids as induction medicine, but they have too many long-term side effects. So we don't want to try and use them for maintenance therapy and they don't work very well for maintenance therapy.

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So we put them on what are called "Immunomodulators" – medicines that tune down the immune system. And those would be things like 6-Mercaptopurine, or Imuran, or Methotraxate. That's usually the combination of things that would get used.

Now what we're learning about Crohn's Disease, in the past there's been this traditional step-up therapy which is what you alluded to earlier – start with the mild things and work your way up. What we're learning is that at least for some people they're more likely to have kind of a severe course and develop complications and stuff and so for that group of people it may be important to really start with the top of the therapies.

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The things that have potentially a little bit more risk but are more effective and then see if we can back off over time. So oftentimes in situations where we have somebody who's at risk for more serious kinds of disease, we'll start with what are called "Biologics," they're drugs that block necrosis factor; Remicade, Humira, Cimzia – those types of medications. And then we may or may not use 6-MP or Imuran or Methotrexate along with those. So really starting with the things that we have that work very, very best and then seeing over time if we can decrease those.

There's another group of medication called "Aminosalicylates" or "5 ASA" drugs and those have been shown to work pretty well for mild to moderate Ulcerative Colitis. So in the beginning we'll often use those medications with the Ulcerative Colitis patients but it's not clear that they work terribly well for Crohn's Disease. So sometimes they get used for Crohn's and sometimes they don't just depending on the situation.

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If somebody is on stable therapy and then subsequently get sick, it really depends on the timing. So if they're newly diagnosed, we'd do their induction therapy, we start them on maintenance therapy. And as soon as we start taking away their induction therapy they start getting sick again and we start saying, "Well maybe that maintenance therapy isn't really going to be a good one. So we'll do induction and a different maintenance therapy."

You contrast that to somebody who, let's say they got their induction therapy with steroids, they got started on 6-MP, they don't have a flare-up for 3 1/2 years, and probably those people – we'll just put them on steroids again and just leave then on 6-MP just to get them back in the remission and see if we can get another three or four years before they have any problems.

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Dr. Rick McClead: Sometimes when they do develop problems surgery is indicated, what are those criteria?

Dr. Wallace Crandall: Surgery differs a little bit with Crohn's and Colitis and the reason is, back at the beginning I said, for Ulcerative Colitis it only affects the colon, but Crohn's can affect anywhere. So for Ulcerative Colitis, if the medicines aren't working or if the person just decides that they're done taking medicines and they don't want to deal with that anymore, you can take out the colon, you can do a colectomy and "cure the disease." You know there's always problems, but people can do pretty well without their colon, so some people choose to do that especially if the medicines haven't been terribly effective for them.

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With Crohn's Disease, it's a little bit different because if you take out a portion of the colon or the small intestine for Crohn's Disease and you saw that back together, the Crohn's Disease is likely going to come back again. Oftentimes right where you sewed it together, so you can't just take something out and think that you're cured with Crohn's. So Crohn's surgery is usually more for complications. Sometimes with Crohn's Diseasem people will develop strictures which is a narrowed area and some scarring. So the surgeons can go in and remove that narrowed area and saw things together again. Sometimes they will develop a fistula or an abscess.

A fistula is a tract connecting things that shouldn't be connected. Or an abscess – a pocket of pus, an infection. And so the surgeons will go in and clean that out and close up the fistula and that sort of thing. Occasionally, even with Crohn's disease the colon will be so severely inflamed and not responding to medicine that taking it out is still the best option but, it's different than with Ulcerative Colitis. We haven't cured anything; we've just taken out the part that was causing them the greatest among of problem.

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Dr. Rick McClead: You had mentioned that remission is one of I guess the major outcome metrics for the ImproveCareNow Network. What are some of the other parameters you're looking at as a way to know that you're program is working for the patient population?

Dr. Wallace Crandall: Yeah, right. So we look at a number of process measures and the number of outcome measures.

Process measures – we have a bundle measure where we look to see that everything that we think should be done or to visit was actually done; Was growth measured? Was nutrition evaluated? Did we categorized their disease? Did we assess adherence that we do these kinds of things?

Other process measures; Are they correct dose of medications? Did they get tested for tuberculosis before they got started on certain medications? – So those aren't outcomes, but there're things that we think are important in getting the outcomes that we want.

0:32:11.1

Outcome measures – the big thing is remission. We also look at steroid use. So generally speaking, we try not to have kids on steroids. So, steroid-free remission and just steroid use in general are a couple of our outcome measures. We look at growth and nutritional status as well and generally we've had sort of subjective measures of growth and nutrition, meaning that the doctor will look at the growth curve and say, "Yeah their rate of growth seems normal."

We're actually with some of a newer technology that we are developing, we'll be able to look at more objective measures; the height velocity. So just to be able to look at the growth points and put out a number that represents their rate of growth for that period of time.

Dr. Rick McClead: What are the families telling you about this change in approach to managing IBD?

0:33:04.6

Dr. Wallace Crandall: When we first started out and this was the wrong approach but it's the way I was thinking about it at that time. What I wanted to do was build a system that was so seamless that the patients couldn't tell anything was different. That when they came in to a clinic visit everything was still kind of the same but we were just sure that everything was being done correctly and that's how we did it in the beginning.

We're currently in the process of making sure that every single patient in the practice knows exactly what we're doing and how we're doing it and that sort of thing. And the feedback is really been great. People are very happy that we're doing this; they're excited about the results that are being achieved. And they're very supportive, not only that we're doing it, but if they can be directly supportive, probably 99% of the patients that we see sign a consent form saying that it's OK to use their data for research purposes. We've just been using it for quality improvement, generally speaking.

0:34:07.6

But they're excited about what we're doing and they want us to continue to take those next steps and continue to improve care, not just for their child but for all the kids in the future.

0:34:16.7

Dr. Rick McClead: That's great. Well that's all the time we have for this edition of Children's On Quality.

Children's on Quality is produced by Kelly Nightingale. Our theme music, Fleeing Moments, was composed by Ryan McClead.

Announcer: If there is a quality of care issue that you would like to hear more about, let us know by contacting us on our podcast website or send us a message through Twitter, our handle is @nationwidekids.

Dr. Rick McClead: Next time on Children's On Quality we will be discussing the Treat Me With Respect Program.

Until then, this is your host Dr. Rick McClead McClead wishing you the best of health.

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