News and Features Research unlocks understanding of IBD and Crohn's Disease

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Leading the way in IBD treatment adherence and therapeutics

Approximately 50 percent of children and adolescents with Inflammatory Bowel Disease (IBD) don’t follow treatment regimens as prescribed, creating a host of complex health issues related to poor compliance and disease management. Michele Maddux, PhD, Licensed Psychologist, Children’s Mercy Division of Developmental and Behavioral Sciences/Division of Gastroenterology, and Assistant Professor of Pediatrics with the University of Missouri-Kansas City School of Medicine, is researching new ways to improve treatment adherence in these patients. 

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Michelle Maddux, PhD

Study Funding at the National Level

At a national level, she is the current chair-elect for the Pediatric Gastroenterology Special Interest Group (SIG) through the American Psychological Association’s Society of Pediatric Psychology (Division 54). Dr. Maddux has received internal grant funding and is currently conducting a study on a subset of adolescent IBD patients who have been identified by their gastroenterologists as non-adherent to oral medication. Dr. Maddux’s innovative research applies single-subject methodology, evaluating the efficacy of interventions on real-life patients.

The research complements the comprehensive services of the Inflammatory Bowel Disease Program, under the leadership of Julie Bass, DO, Medical Director. Individualized treatment and educational resources are provided and patients have access to the ImproveCareNow Collaborative, a partnership between more than 30 pediatric gastroenterology centers.

Electronic Monitoring May Enhance Medication Adherence

In this study, adolescent participants and their parents receive a four-week individually-tailored adherence promoting intervention package after first being randomized to undergo a three-, five-, or seven-week baseline phase (no treatment). At the start of the study, each family receives a digital pill box that monitors weekly adherence to the medication throughout their participation in the study. The pill box is used as the primary measure to examine changes in adherence pre- and post-treatment, yet adherence also is measured via weekly pill counts and self-reported adherence. 

Children’s Mercy is the only pediatric IBD program in the nation to use this type of electronic pill box to target adherence. Dr. Maddux reviews these electronic pill box results with the adolescents and their parents.

"During these visits, we look at the electronic pill box data to identify specific days/times when the child may have had a problem with adherence. We look for patterns. We discuss possible barriers, problem-solve around those barriers, and look at what parents can do to support the adolescent," Dr. Maddux said.

Though her research isn’t completed, Dr. Maddux said initial results are promising.

"We are seeing an improvement in adherence in our study group and families are empowered. This is very exciting because our focus is to conduct research clinicians in IBD clinics across the nation can apply feasibly in their practice to help these patients lead healthier lives."

Dr. Maddux also has recently submitted a grant proposal to the National Institutes of Health that would fund an interdisciplinary intervention to help adolescents with IBD transition from pediatric to adult care and engage in appropriate self-care.

Investigating the Potential Genetic Link to Crohn’s Disease

Finding better therapies for children with IBD, and specifically Crohn’s Disease, is the pursuit of Valentina Shakhnovich, MD, Gastroenterology and Clinical Pharmacology Fellow at Children’s Mercy. Dr. Shakhnovich is the only fellow in the nation completing dual training in pediatric clinical pharmacology and pediatric gastroenterology. With the hospital’s sophisticated resources, support from the laboratory, and patient participation from the multidisciplinary IBD Clinic, she has spent the past two years examining small intestine biopsies from children with Crohn’s Disease. Her research is looking specifically at the gene Pregnane X Receptor (PXR) in inflammation and pediatric IBD.

"We’ve learned that this gene, and the protein that it makes, is influenced by inflammation in the small intestine and that it interacts with the immune system. We want to understand whether PXR may be a reason why we see an alternating pattern of healthy and inflamed intestine in children with Crohn’s Disease," she said.

Presenting the Results of PXR Research to a National Audience

Dr. Shakhnovich presented her active and ongoing research on PXR at the 2013 Advances in Inflammatory Bowel Diseases: Crohn’s and Colitis Foundation’s Clinical and Research Conference. Her abstract titled:

"Decreased Pregnane X Receptor (PXR) Expression in Inflamed versus Non-Inflamed Small Bowel of Children with Crohn’s Disease," demonstrated a statistically significant decrease in PXR expression in actively inflamed versus non-inflamed small intestine of pediatric patients with Crohn’s Disease.

Dr. Shakhnovich continues to recruit children for the next phase of her research, which will continue to study the PXR gene and its targets. Eventually, the hope is that her research will lead to a new therapeutic target in the treatment of pediatric Crohn’s Disease, and subsequent repurposing of an existing drug to help treat this patient population.

"Every discovery we make is an additional piece of the puzzle," Dr. Shakhnovich said. "If the PXR gene is involved in Crohn’s Disease, the potential is there to use the gene to create more targeted medical therapies and treatment options for pediatric patients; so that, ultimately, they can live healthier, better quality lives."

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