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

M. ten Have, H. H. Fidder, M Leenders, A.A. Kaptein, M.E. van der Valk, A.A. van Bodegraven, G. Dijkstra, D.J. de Jong, M. Pierik, C. Y. Ponsioen, A. E. van der Meulen Jong, C.J. van der Woude, P. C. van de Meeberg, M. Romberg, C.H. Clemens, J.M. Jansen, N. Mahmmod, C. J. Bolwerk, J. R. Vermeijden, P.D. SiersemaB. Oldenburg*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


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.
Original languageEnglish
Pages (from-to)369-377
Number of pages9
JournalInflammatory Bowel Diseases
Issue number2
Publication statusPublished - Feb 2015


  • IBD disability index
  • illness perceptions
  • determinants
  • health care costs

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