Fact Sheet: Pediatric Inflammatory Bowel Disease

Inflammatory Bowel Disease (IBD) refers to a group of diseases, namely Crohn’s disease (CD) and ulcerative colitis (UC), which cause inflammation in different portions of the digestive system. CD can affect the large and small intestine, while UC usually affects only the large intestine (colon). The etiology remains unknown, yet it is believed that a combination of genetics and environment play major roles in the development of IBD.

Prevalence and Course

Recent estimates indicate that approximately 1.4 million Americans have been diagnosed with IBD, with that number evenly split between Crohn's disease and ulcerative colitis. Males and females are affected equally.

IBD is a lifelong chronic condition that is characterized by active periods (flares) and inactive periods (remission), and common symptoms include abdominal pain, diarrhea, bloody stools, fatigue and weight loss. Symptoms and the frequency and severity of flares vary from person to person, and may change over time. Most people with IBD can be treated with medication and proper nutrition. No medication can cure IBD, but medication is used to reduce the frequency of flares and maintain periods of remission. In some patients who do not achieve remission with medication, surgery is considered.   

Health and Psychosocial Consequences

Youth with IBD are at higher risk of depressive disorders and parent-reported internalizing symptoms (either depression or anxiety symptoms), compared to youth with other chronic conditions. Youth with IBD also report lower quality of life (QOL) and poorer social functioning in comparison to healthy youth.

Evidence-based Assessment

Domains of assessment with relevance to youth with IBD include QOL, social, emotional, school and family functioning, disease severity, and adherence. Some well-validated IBD-specific assessment tools are available to measure QOL (IMPACT-III) and disease severity (e.g., PCDAI).

Culture, Diversity, Demographic and Developmental Factors

Most youth diagnosed with IBD are Caucasian; however the prevalence of IBD has been increasing steadily among African Americans. Studies that examine causes and differences in disease course of IBD in different ethnic groups are needed.

On average, Crohn’s disease is diagnosed during adolescence and young adulthood, affecting mainly those between the ages of 15 and 35. Approximately 10 percent of patients with Crohn’s disease are youth under the age of 18. In contrast, although ulcerative colitis can occur at any age it is usually diagnosed in the mid-30s.

Evidence-based Interventions

Few evidence-based interventions for youth with IBD exist. Preliminary data provides support for a cognitive-behavioral therapy intervention in improving symptoms of anxiety and depression, and maintaining these improvements. Preliminary data also supports the use of individually tailored behavioral intervention to improve adherence to oral medication among adolescents with IBD.


Greenley, R.N., Hommel, K.A., Nebel, J., et al. (2010). A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease. Journal of Pediatric Psychology, 35, 857-869.

Hommel, K.A., Herzer, M., Ingerski, L.M., Hente, E., & Denson, L.A. (2011). Individually tailored treatment of medication nonadherence. Journal of Pediatric Gastroenterology and Nutrition, 53, 435-439.

Hyams, J.S., Ferry, G.D., Mandel, F.S., et al. (1991). Development and validation of a pediatric Crohn's disease activity index. Journal of Pediatric Gastroenterology and Nutrition, 12(4), 439-447.

Otley, A., Smith, C., Nicholas, D., et al. (2002). The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. Journal of Pediatric Gastroenterology and Nutrition, 35(4), 557-563.

Szigethy, E., Hardy, D., Craig, A.E., Low, C., & Kukic, S. (2009). Girls connect: effects of a support group for teenage girls with inflammatory bowel disease and their mothers. Inflammatory Bowel Diseases, 15, 1127-1128.