Children and young adults who have inflammatory bowel disease (IBD) like Crohn’s disease, indeterminate colitis, or ulcerative colitis require careful and diligent medical management to minimize and prevent flare-ups of symptoms, complications, surgeries, and days spent in the hospital.
IBD is a challenging disease to have because right now there is no cure, and symptoms tend to wax and wane over time. For children especially, this can mean they look “normal” on the surface to their peers, but they may be struggling off and on with abdominal pain, vomiting, diarrhea, and fatigue that prevent them from participating in the activities they would like to pursue. As a result, IBD can be uncomfortable, discouraging, and socially isolating.
IBD is relatively common, affecting about 1 million Americans; the majority of cases are diagnosed in people less than 30 years old. Here at the pediatric GI program at University of Michigan C.S. Mott Children’s Hospital, we take care of approximately 500 children and young adults with inflammatory bowel disease.
Helping end a symptomatic flare of IBD and stay in remission can be a process of trial and error, but it is important to get right so children with IBD can live normal and healthy lives. We believe there is always room for improvement, and there’s so much more we want to know about how we can help manage pediatric IBD more effectively.
That’s the main reason our pediatric GI division became a member of ImproveCareNow, an international collaborative network of pediatric GI care centers focused on improving the health of children and young adults with IBD.
What we know about how to manage the care of children with IBD as a single institution pales in comparison to what we can learn when we work with other programs and analyze what works and doesn’t work across a much larger number of patients than what any one program could ever care for on its own. There’s power in numbers, and also power in sharing our successes, our challenges, and our ideas and strategies from center to center.
There are 74 centers from the U.S. and U.K. that participate in ImproveCareNow. We work together to gather patient data and then look at how the care we provide our patients compares with data from across the network. IBD caregivers, patients, and families meet twice a year to discuss this data and share ideas for improvement.
We’ve made some changes in how our program at Mott is structured, to help us take full advantage of the benefits that access to this kind of data can provide. One of the most significant changes is the addition of our weekly IBD population management meeting.
Our IBD care team meets once a week to review clinical data and discuss patients with active symptoms, newly diagnosed patients, or children with recent hospitalizations and/or surgeries. It’s a real-time quality improvement initiative. We discuss each patient and the best course of treatment. We make sure nurses are checking in with patients who need follow up. We also let the parents know we’ll be discussing their child to ask for their input as well. That helps us know their goals for remission in addition to ours. So if a kid’s goal is to be able to play soccer again, we’ll work towards helping him or her achieve that goal.
During our meetings, we catch things that might have fallen through the cracks before, like patients who needs to have labs drawn, needs a follow-up visit, aren’t growing as well as they should be, or have outgrown their dose of medication. There’s a lot of value in knowing what’s going on with our patient population. It allows us to focus our time and efforts. Families have given feedback that they like this collaborative approach to helping children feel better and achieve their own goals.
When we joined the ImproveCareNow network in 2009, about 68 percent of our patients were symptom free. Now, around 85 percent of our patients are symptom free. This occurred without any new or more effective medications – it simply came from paying closer attention to our sickest patients and not letting our healthier patients fall through the cracks. That’s a great improvement that we attribute to our participation in the program.
Going forward, we are working to further engage patients and families in our quality improvement efforts so that we can understand from their perspective how we can provide the best IBD care. We are currently designing a parent and family feedback group, and we involve parents in our quality improvement projects. In addition, trained patients and parent volunteers are available to offer support to newly diagnosed patients or those patients facing difficult symptoms and medical decisions.
Our other quality improvement efforts include researching why children require hospitalization for their IBD and if there are ways to prevent admission and/or readmission, as well as working with our pediatric surgeons to standardize the care kids with IBD receive while they are in the hospital. I’m very excited to be a part of these efforts and it is fantastic to see improvement in how many patients we have with symptom-free IBD. My goal is to have kids with IBD and their families only think about their disease when they take their medicine, come to clinic, and have labs drawn – otherwise they can be enjoying school, activities, and their summer vacation!
Take the next steps:
- Learn more about Crohn’s disease and ulcerative colitis.
- Learn more about pediatric gastroenterology services at Mott.
- Learn more about the ImproveCareNow initiative.
Haley Carmichael Neef, MD, was born and raised in Michigan, and is a member of the pediatric GI division at U-M C.S. Mott Children’s Hospital, where she completed both her residency and fellowship. She specializes in pediatric IBD and is working to improve social support networks, disease management education, and transition management for patients and their families. She is a physician lead for the division’s involvement in ImproveCareNow, a national pediatric IBD quality improvement collaborative. Dr. Neef sees patients at the C.S. Mott Children’s Hospital Subspecialty Clinic and the Northville Health Center.
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.