Disease-Related Distress in Pediatric IBD: Development and Validation of the Crohn’s and Colitis Distress Scale

Objective: Inflammatory bowel disease (IBD) is characterized by inflammation in the gastrointestinal tract with painful and distressing symptoms periods of exacerbations and remissions. Youth with IBD are at increased risk of experiencing challenges across psychosocial functioning. Mental health concerns (i.e., anxiety, depression) are commonly assessed in youth with IBD, but measures used to assess psychopathology may not fully capture emotional distress unique to living with IBD. There remains no well-validated measure of IBD-specific distress in pediatrics. Method: The Crohn’s and Colitis Distress Scale (CCDS), a newly developed measure of pediatric IBDdistress, was completed by 120 youth with IBD during routine care. The psychometric properties of the measure were examined. Results: The Cronbach’s alpha for the full scale was.94 and subscale internal consistency ranged from.66 to.90. Longer time since diagnosis and longer time since last flare was associated with lower IBDdistress. Further, greater IBD-distress was reported in girls with a diagnosis of ulcerative colitis, currently symptomatic, or currently flaring respective to their counterparts. Though moderately to largely correlated (.30 < r <.73), IBD-distress was found to be a distinct construct from global anxiety and depression. Conclusions: Data support the use of an instrument specific to IBD-distress, such as the CCDS, to allow for more accurate detection of risk for emotional distress in IBD. Further assessment of the reliability and validity of the measure within larger, more diverse samples is warranted.