Many children with Crohn's disease and IBD benefit from ImproveCareNow

Many children with Crohn's disease and ulcerative colitis who received treatment through ImproveCareNow, a national quality improvement and research network, ceased to have symptoms and no longer needed to take steroids for disease management. These are the findings from a study appearing in Pediatrics that examined the ImproveCareNow network's quality improvement efforts and their impact on outcomes. In this study, the proportion of children with Crohn's disease who were in remission increased from 55 percent to 68 percent, with a similar improvement in ulcerative colitis patients.

Crohn's disease and ulcerative colitis, also called inflammatory bowel disease (IBD), are gastrointestinal disorders that lead to intestinal inflammation as a result of an overactive immune reaction. Despite therapeutic advances in the treatment of pediatric IBD, there has been limited improvement in outcomes over the last several decades.

"IBD management varies greatly throughout the country due to a lack of consensus on best practices and inadequate care delivery systems," said study author Wallace Crandall, MD, director of the Center for Pediatric and Adolescent Inflammatory Bowel Disease at Nationwide Children's Hospital, and ImproveCareNow physician leader. "Nationally, IBD patients receive differing diagnostic, treatment and nutritional interventions, suboptimal medication dosages, prolonged prescription of corticosteroids, and fail to receive steroid-sparing agents."

The ImproveCareNow Network was formed in 2007 to improve the care and outcomes of children with Crohn's disease and ulcerative colitis. It has grown to include 33 centers with 300 gastroenterologists and 10,000 patients. The network developed a set of recommendations to standardize diagnosis and treatment, classify disease severity and evaluate nutritional and growth status. Participating centers implemented these standards for their IBD patients.

There is evidence to suggest that redesigning specific elements of chronic care delivery can improve quality and outcomes for patients. However, most of this work has taken place in adult primary care practices. "Few pediatric centers have enough patients to determine if changes in care delivery are making a difference," said co-author Peter Margolis MD, PhD, senior director of ImproveCareNow and director of Research at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children's Hospital. "Networks of care centers, which have become increasingly popular in the past decade, are developing as an important avenue to accelerate improved outcomes and research in pediatrics."

Data were collected from six participating centers and included 1,188 children treated between July 2007 and April 2010. Findings showed improvements in specific care processes. The proportion of Crohn's disease and ulcerative colitis patients in remission increased; the percentage of Crohn's disease patients taking corticosteroids decreased.

"The improvement we observed took place over a relatively short period of time during which no new therapies were introduced into routine clinical practice," said co-author Michael Kappelman MD, MPH, assistant professor of Pediatrics at the University of North Carolina at Chapel Hill. "These results suggest that collaborative quality improvement methods focused on improving chronic illness care can lead to improved process and outcome measures in children with IBD." Dr Richard Colletti, Network director of ImproveCareNow and professor of Pediatrics at the University of Vermont, continued, "These improvements were likely the result of changes in the care delivery systems rather than a single specific intervention." Further study is needed to determine which combination of interventions is most important to improve the outcomes of these patients.

Dr. Crandall says that collaborative quality improvement methods focused on improving chronic illness care is likely to improve process and outcome measures in other chronic diseases as well. A significant investment of time and resources is required to participate, but "it's evident that redesigning specific elements of chronic care delivery has relevance to pediatric subspecialty care," said Dr. Crandall.