Self-reported Disability in Patients with Inflammatory Bowel Disease Largely Determined by Disease Activity and Illness Perceptions

BACKGROUND: The inflammatory bowel disease (IBD) disability index has been introduced to measure patients' physical, psychological, familial, social limitations associated with IBD. We assessed factors related to self-reported disability and the relationship between disability and health care costs. METHODS: A large cohort of patients with Crohn's and ulcerative colitis (UC) was prospectively followed for 2 years by 3 web-based questionnaires. At 2 years, patients completed the IBD index, with lower score indicating more disability. Linear regression was used to examine the impact of demographics, clinical illness perceptions on self-reported disability. Trends in direct health costs across the disability severity groups minimal, mild, moderate, and were tested. RESULTS: A total of 554 patients with CD and 424 patients completed the IBD disability index (response rate, 45%). Both clinical characteristics and illness perceptions significantly contributed to self-reported disability (45%-47%, P = 0.000 and 8%-12%, P = 0.000, respectively). Patients with CD scored lower on the self-reported IBD index than patients with UC (0.255 versus 3.890, P < 0.000), indicating disability in patients with CD. Factors independently associated with self-reported disability rates were increased disease activity, illness (higher number of symptoms attributed to IBD), and stronger emotional Disease duration and disease phenotype were not associated with self- disability. Direct health care costs increased with the worsening of self-reported disability (P = 0.000). CONCLUSIONS: More disability was by patients with CD than by UC. Self-reported disability in IBD was determined by clinical disease activity and illness perceptions but not disease duration or disease phenotype.