THE CROHN’S AND COLITIS DISTRESS SCALE: ASSESSING THE DOMAINS OF IMPACT IN YOUTH WITH IBD

Abstract

Abstract INTRODUCTION Youth with Inflammatory Bowel Disease (IBD) are at significantly increased risk for depression and anxiety, with 25%-40% of youth with IBD reporting internalizing symptoms. These data are based on general measures of anxiety and depression without accounting for the confounds of disease-related processes. Disease-distress, on the other hand, disentangles disease-related processes, including medication sides effects, and the emotional experience of managing a chronic illness. Harris et al. developed a measure of IBD-related distress, the Crohn’s and Colitis Distress Scale (CCDS), to assess the expected worries, concerns, and fears associated with having IBD. This study involved an exploratory factor analysis (EFA) of the CCDS to better categorize IBD distress. METHODS Participants (N=120, ages 12-18, diagnosis of IBD) completed the 27-item CCDS. About half of participants were male (n=66; 55%) and majority were White (n=104; 86.7%). Eighty participants were diagnosed with Crohn’s disease (66.7%) and forty with ulcerative colitis (33.3%). Average length of time since diagnosis was 3.31 years (SD=2.77 years) and average length of time since participants’ last flare was 18.03 months (SD=24.65 months). A subsample of participants reported currently being symptomatic (n=44; 36.7%) and currently flaring (n=27; 22.5%). An EFA with varimax rotation was conducted to assess the factor structure of the CCDS. RESULTS The CCDS yielded a five-factor structure, with three to seven items per factor. Factor loadings ranged from .44 to .83 (see Table). Five factors were extracted from the EFA: emotional burden, physician-related, disease-related interpersonal, regimen-related, and disease-related functional impairment. An item-to-total analysis indicated 23 of 27 total items correlated strongly with the total (r > .5), four items were moderately correlated with the total (r= .43, r= .42, r= .38, and r= .49), and no items were largely uncorrelated with the total. Based on the factor analysis results, only items with an adequate factor loading, or were face valid or unique items for their respective factor domain, were retained. A final 22-item CCDS was supported. CONCLUSIONS The CCDS demonstrated a five-factor structure and the 22-item version was psychometrically sound. The factors that emerged are consistent with the disease-specific distress domains identified in other pediatric health populations (e.g., type 1 diabetes), as well as symptom-related distress as found in adults with IBD. Further validation of the measure is warranted, including assessment of the psychometric soundness of the regimen-related subscale. To our knowledge, the CCDS is the first multifaceted IBD-specific distress instrument to be developed for use with pediatric patients and may allow for further specificity in the identification of IBD-specific distress in this population.