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
  • , Mariëlle J L Romberg-Camps
  • , Cees H M Clemens
  • , Jeroen M Jansen
  • , Nofel Mahmmod
  • , Clemens J M Bolwerk
  • , J Reinoud Vermeijden
  • , Peter D Siersema
  • Bas Oldenburg,

Research output: Contribution to journalArticleAcademicpeer-review

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.

Original languageEnglish
Pages (from-to)369-377
Number of pages9
JournalInflammatory bowel diseases
Volume21
Issue number2
DOIs
Publication statusPublished - Feb 2015

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

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