A 13-year old boy feels tired, gets stomach aches from time to time, and his bowel movements have become more frequent and loose. He’s worried, but he doesn’t like to talk about his symptoms, so they continue, quietly. His mother notices that he’s looking pale and not quite right, and takes him to his local doctor. His pediatrician refers him to the Pediatric GI service at The University of Vermont Children’s Hospital at the UVM Medical Center. Blood tests, x-rays and colonoscopy show that he has Crohn’s disease.
Crohn’s disease is a serious chronic inflammation of the intestinal tract. In children it can cause poor nutrition, poor growth, anemia, fatigue, pain, diarrhea and bloody stools. In the US, there are 40,000 children and youth with Crohn’s disease. The exact cause is unknown. People with Crohn’s disease appear to have genes that affect the immune system. Bacteria in their intestines become out of balance. Symptoms will get worse unless there is appropriate diagnosis and treatment. There is no known cure. But, medications can for most patients bring a return to good health. Patients can feel well and be fully active.
The University of Vermont Children’s Hospital at the UVM Medical Center has pediatric gastroenterologists who are specially trained to diagnose and treat Crohn’s disease and other GI diseases in children. They have the experience and resources to quickly determine the diagnosis and begin appropriate treatment. The University of Vermont Children’s Hospital also has the advantage of being one of 60 care centers in the US that are participating in ImproveCareNow. ImproveCareNow is a network of pediatric gastroenterologists working together to improve the health and care of children and youth with Crohn’s disease and ulcerative colitis.
ImproveCareNow provides training and coaching in quality improvement to the team at The University of Vermont Children’s Hospital. It also provides important tools to make care more reliable and pro-active. These tools include a registry for data about the care and outcomes of the children with Crohn’s disease at The University of Vermont Children’s Hospital and the other care centers. The information is analyzed and compared to patients at the other children’s hospitals in the network. Reports are available in real-time to help the pediatric gastroenterologists at The University of Vermont Children’s Hospital care for their patients in between visits. This is called population management. There is also a report to improve care at the time of visits (via a pre-visit planning checklist). The ImproveCareNow Model Care guideline helps to standardize care with best practices.
In addition, patients and families are engaged in ImproveCareNow. For example, parents of two patients are on the quality improvement team at The University of Vermont Children’s Hospital. Because clinicians, patients, parents and researchers are collaborating to improve care and health, more children and youth with Crohn’s disease are now feeling well instead of sick today. The remission rate has increased from 50 percent to over 75 percent. By working together, they are creating what is called a Learning Health System, that integrates clinical care, quality improvement and research. This will speed up discovery, innovation and improvement, all in real time. The University of Vermont Children’s Hospital, its clinicians and staff, as well as patients and families, are benefiting from this collaboration.
Participation by The University of Vermont Children’s Hospital in ImproveCareNow is supported by the James M. Jeffords Quality Institute at the UVM Medical Center, the Department of Pediatrics at the UVM College of Medicine, and a generous contribution by Edwin Colodny. Jesse Dylan, the award-winning filmmaker, has made a short film about the ImproveCareNow Network that can be viewed at http://bit.ly/joinICN.
Richard Colletti, MD, is a pediatric gastroenterologist at the University of Vermont Medical Center and a professor at the University of Vermont College of Medicine.