Self-reported disability in patients with inflammatory bowel disease largely determined by disease activity and illness perceptions
van der Have, Mike; Fidder, Herma H; Leenders, Max; Kaptein, Ad A; van der Valk, Mirthe E; van Bodegraven, Ad A; Dijkstra, Gerard; de Jong, Dirk J; Pierik, Marieke; Ponsioen, Cyriel Y; van der Meulen-de Jong, Andrea E; van der Woude, C Janneke; van de Meeberg, Paul C; Romberg-Camps, Mariëlle J L; Clemens, Cees H M; Jansen, Jeroen M; Mahmmod, Nofel; Bolwerk, Clemens J M; Vermeijden, J Reinoud; Siersema, Peter D; Oldenburg, Bas; COIN Study Group
(2015) Inflammatory bowel diseases, volume 21, issue 2, pp. 369 - 377
(Article)
Abstract
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
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(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.
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Keywords: Adult, Colitis, Ulcerative, Crohn Disease, Disabled Persons, Female, Follow-Up Studies, Humans, Male, Middle Aged, Perception, Prognosis, Prospective Studies, Quality of Life, Self Report, Severity of Illness Index, Surveys and Questionnaires, Journal Article, Research Support, Non-U.S. Gov't
ISSN: 1078-0998
Publisher: John Wiley and Sons Inc.
(Peer reviewed)