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NIH grant will create behavioral health registry for pediatric inflammatory bowel disease

PROVIDENCE, RI The National Institutes of Health has awarded a two-year development grant to researchers with Hasbro Children's Hospital and the Bradley Hasbro Children's Research Center to better understand the role behavioral health plays in pediatric inflammatory bowel disease (IBD), a condition that causes chronic and painful inflammation in the gastrointestinal tract.

The $500,000 grant, funded by the American Recovery and Reinvestment Act of 2009 (ARRA) and awarded by the National Institute of Child Health and Human Development (NIHCD), will establish the nation's first multi-center behavioral health registry of newly-diagnosed children and teens with IBD, including Crohn's disease and ulcerative colitis.

The registry will assess the influence of psychosocial and behavioral factors such as stress, emotional, social and family functioning on IBD status, disease activity and outcomes in young patients, and will also look closely at medication adherence.

Neal LeLeiko, MD, PhD, director of the division of gastroenterology, nutrition and liver diseases at Hasbro Children's Hospital, and Debra Lobato, PhD, director of child psychology at Hasbro Children's Hospital and a researcher with the Bradley Hasbro Children's Research Center, will lead the project.

Studies have confirmed the increased incidence of IBD in children. Although there currently is no cure and some patients require surgery, innovative methods including maintenance medications can control symptoms and improve quality of life. These treatments, however, often have undesirable side effects. Previous research has also shown a strong association between IBD and mental health problems in children and teens, including depression, anxiety, low self-esteem and poor body image.

"This project is a unique collaboration between pediatric gastroenterology and child psychology that will enhance our ability to study the connection between behavioral and biological health," said LeLeiko. "The information that we gather could help us identify psychosocial and physical markers of IBD progression and treatment outcomes that could lead to the development of improved interventions for both adults and children."

IBD often presents itself in adolescence a period associated with poor medical adherence and high rates of risky health behaviors, like smoking or substance use making it a challenge for clinicians treating these patients.

"Studies have shown that adolescents with IBD report taking only half of their prescribed maintenance medications for IBD, which can exacerbate their disease," said Lobato. "This registry will help us understand why some kids take their medications and others do not. By identifying and eliminating the barriers that impact adherence, we can improve the overall health of these children and help them live happy, productive lives."

Working in collaboration with the 26 members of the Pediatric IBD Collaborative Research Group which includes Hasbro Children's Hospital researchers will assess the "bio-behavioral" factors involved in IBD medication adherence by:

  • Providing pill bottles equipped with a microchip in the cap that records when the child opens the bottle.
  • Interviewing both children and parents about issues ranging from youth risk behaviors to stress to functional ability, such as sleep and success in school.
  • Conducting routine blood work to monitor the child's disease and the presence of the medication in the child's system.

As a second piece to the study, researchers plan to export their initial findings from the IBD Behavioral Health Registry to two members of the Pediatric IBD Collaborative Research Group North Shore/Long Island Jewish Medical Center and Connecticut Children's Hospital for piloting. Once the "biobehavioral" protocols have been finalized, LeLeiko and Lobato hope to work with other young patients with IBD from other hospitals and regions across the country.

"This landmark study not only opens the door for future collaborative research but it also places a much-needed emphasis on integrated care," said LeLeiko, who is also a professor of pediatrics at The Warren Alpert Medical School of Brown University.

Lobato, a clinical associate professor of psychiatry and human behavior at Alpert Medical School, added that the findings could have implications for other chronic illnesses that require maintenance medications, such as diabetes.


Contact: Jessica Collins Grimes

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