title: Self-reported disability in patients with inflammatory bowel disease largely determined by disease activity and illness perceptions.
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 (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.
authors.affiliation: 1Department of Gastroenterology and Hepatology, University Medical Center Utrecht, the Netherlands; 2Medical Psychology Section, Leiden University Medical Center, Leiden, the Netherlands; 3Department of Gastroenterology and Hepatology, VU University Medical Center, Amsterdam, the Netherlands; 4Department of Gastroenterology and Hepatology, Orbis Medical Center, Sittard, the Netherlands; 5Department of Gastroenterology and Hepatology, University Medical Center Groningen, Groningen, the Netherlands; 6University of Groningen, Groningen, the Netherlands; 7Department of Gastroenterology and Hepatology, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands; 8Division of Gastroenterology and Hepatology, Maastricht University Medical Center, Maastricht, the Netherlands; 9Department of Gastroenterology and Hepatology, Academic Medical Center, Amsterdam, the Netherlands; 10Department of Gastroenterology and Hepatology, Leiden University Medical Center, Leiden, the Netherlands; 11Department of Gastroenterology and Hepatology, Erasmus University Medical Center, Rotterdam, the Netherlands; 12Department of Gastroenterology and Hepatology, Slingeland Hospital, Doetinchem, the Netherlands; 13Department of Gastroenterology and Hepatology, Diaconessenhuis, Leiden, the Netherlands; 14Department of Gastroenterology and Hepatology, Onze Lieve Vrouwe Gasthuis, Amsterdam, the Netherlands; 15Department of Gastroenterology and Hepatology, St. Antonius Hospital, Nieuwegein, the Netherlands; 16Department of Gastroenterology and Hepatology, Reinier de Graaf Groep, Delft, the Netherlands; and 17Department of Gastroenterology and Hepatology, Meander Medical Center, Amersfoort, the Netherlands.
authors.forename: Mike
authors.initials: M
authors.lastname: van der Have
authors.forename: Herma H
authors.initials: HH
authors.lastname: Fidder
authors.forename: Max
authors.initials: M
authors.lastname: Leenders
authors.forename: Ad A
authors.initials: AA
authors.lastname: Kaptein
authors.forename: Mirthe E
authors.initials: ME
authors.lastname: van der Valk
authors.forename: Ad A
authors.initials: AA
authors.lastname: van Bodegraven
authors.forename: Gerard
authors.initials: G
authors.lastname: Dijkstra
authors.forename: Dirk J
authors.initials: DJ
authors.lastname: de Jong
authors.forename: Marieke
authors.initials: M
authors.lastname: Pierik
authors.forename: Cyriel Y
authors.initials: CY
authors.lastname: Ponsioen
authors.forename: Andrea E
authors.initials: AE
authors.lastname: van der Meulen-de Jong
authors.forename: C Janneke
authors.initials: CJ
authors.lastname: van der Woude
authors.forename: Paul C
authors.initials: PC
authors.lastname: van de Meeberg
authors.forename: Mariëlle J L
authors.initials: MJ
authors.lastname: Romberg-Camps
authors.forename: Cees H M
authors.initials: CH
authors.lastname: Clemens
authors.forename: Jeroen M
authors.initials: JM
authors.lastname: Jansen
authors.forename: Nofel
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authors.lastname: Mahmmod
authors.forename: Clemens J M
authors.initials: CJ
authors.lastname: Bolwerk
authors.forename: J Reinoud
authors.initials: JR
authors.lastname: Vermeijden
authors.forename: Peter D
authors.initials: PD
authors.lastname: Siersema
authors.forename: Bas
authors.initials: B
authors.lastname: Oldenburg
mesh_terms: D000328:Adult; D003093:Colitis, Ulcerative / Q000503:physiopathology* / Q000523:psychology*; D003424:Crohn Disease / Q000503:physiopathology* / Q000523:psychology*; D006233:Persons with Disabilities / Q000706:statistics & numerical data*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D011379:Prognosis; D011446:Prospective Studies; D011788:Quality of Life; D057566:Self Report; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires