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

Mike van der Have, Herma H. Fidder, Max Leenders, Ad A. Kaptein, Mirthe E. van der Valk, Ad A. van Bodegraven, Gerard Dijkstra, Dirk J. de Jong, Marieke Pierik, Cyriel Y. Ponsioen, Andrea E. van der Meulen-de Jong, C. Janneke van der Woude, Paul C. van de Meeberg, Marielle J. L. Romberg-Camps, Cees H. M. Clemens, Jeroen M. Jansen, Nofel Mahmmod, Clemens J. M. Bolwerk, J. Reinoud Vermeijden, Peter D. SiersemaBas Oldenburg*, COIN Study Grp, Dutch Initiative on Crohn and Colitis

*Bijbehorende auteur voor dit werk

OnderzoeksoutputAcademicpeer review

40 Citaten (Scopus)


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

Originele taal-2English
Pagina's (van-tot)369-377
Aantal pagina's9
TijdschriftInflammatory Bowel Diseases
Nummer van het tijdschrift2
StatusPublished - feb.-2015

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