Although there is no cure for the chronic, lifelong condition of inflammatory bowel disease (IBD), Duke’s participation in the ImproveCareNow network is helping to bring about more reliable, proactive IBD care for children and young adults while advancing research and quality improvement practices across the country. IBD—including Crohn's disease, ulcerative colitis, and indeterminate colitis—typically presents in the second decade of life, and those with active disease are at risk for delayed puberty, impaired growth, malnutrition, and psychosocial dysfunction.

As a national clinical database network of more than 100 centers, ImproveCareNow follows quality improvement measures for more than 30,000 pediatric patients. Through this collaborative community of clinicians, researchers, parents, and patients, participating centers continuously work to provide the same standard of care, regardless of location, and access to clinical trials.

“Being involved with ImproveCareNow is important because we really are helping guide the national standards for how pediatric patients with IBD should be treated, using all of our collective experience together,” says Nancy M. McGreal, MD, a Duke pediatric gastroenterologist. “We are trying to make sure that nationally we are using drugs appropriately and at the right time, understanding appropriate monitoring, and trying to generate a standard through our centers.”

A monthly report card is provided for all participating centers, measuring a variety of patient outcomes that help with standardization of care. McGreal says this ImproveCareNow practice provides a constant feedback loop for centers on how they are performing with their population, not only with individual patients.

“With these data, we can compare, for example, the number of patients we have in corticosteroid-free remission, which has a goal of at least 80%. We can see what Duke’s number is, filtered by provider, and then we can compare ourselves to other centers nationally,” she explains. Other measures include patient growth rates, nutrition markers, pre-medication screenings, and remission rates.

ImproveCareNow also runs a host of clinical trials, including the COMBINE study that is examining whether treatment with a single anti-TNF medication (infliximab and adalimumab) or dual therapy that includes methotrexate is more effective in children with moderate to severe Crohn’s disease.

“It’s a nice platform to be able to bring multiple centers together to do these bigger trials,” McGreal says. “It’s so challenging for a relatively small department to figure out all the issues, but to have all these brilliant minds working on common goals, that really gives a lot of hope for patients,” she adds.

As one of eight pediatric gastroenterology specialists at Duke, McGreal also serves as the Duke physician lead for ImproveCareNow and attends the consortium meetings twice a year, where important issues are discussed and solutions are shared that might be of use to other centers. Within the past few years, she notes, there has been an emphasis on increased access to mental health care screenings, toolkits, checklists, and questionnaires as well as transition-of-care guidance for patients moving from pediatric to adult care.

McGreal says it’s important for children starting at ages 12 or 13 to be able to demonstrate an understanding of their disease. This includes knowing what medications they have taken and their reactions to those medications, and whether they have had any procedures or operations and the results. “Our goal at Duke is to graduate educated adult patients who can walk into an adult gastroenterologist’s office and easily communicate this information,” she says.