Identification of areas of functioning and disability addressed in inflammatory bowel disease-specific patient reported outcome measures

Ulrike Achleitner, Michaela Coenen, Jean Frédéric Colombel, Laurent Peyrin-Biroulet, Narine Sahakyan, Alarcos Cieza

Research output: Contribution to journalReview articlepeer-review

21 Scopus citations

Abstract

Background and aims: Patient-reported outcome measures (PROMs) make it possible to assess health-status problems from the perspective of persons suffering from a disease. The objective of the paper is to examine and compare the contents of PROMs related to IBD based on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) as the frame of reference. Methods: A systematic literature review (1999-2009) in the databases Medline, EMBASE, PsycINFO, CINAHL and CENTRAL was performed to select IBD-specific PROMs. Abstracts and full-text articles were checked applying predefined eligibility criteria; IBD-specific PROMs were identified. The contents of the identified PROMs were examined by linking the items to ICF categories. The linked ICF categories of the PROMs were then compared. Results: The review resulted in the selection of eight IBD-specific PROMs (e.g., Cleveland Global Quality of Life, Inflammatory Bowel Disease Quality of Life Questionnaire, Inflammatory Bowel Disease Questionnaire-32, Rating Form of IBD Patient Concerns, Short Inflammatory Bowel Disease Questionnaire). In total, 129 items were identified, the majority of which (n = 90; 69.8%) could be linked to specific ICF categories. None of the linked categories were contained in all PROMs. The most frequently identified categories were 'b1300 Energy level', 'b5254 Flatulence', 'd910 Community life' and 'd920 Recreation and leisure'. Conclusion: The present study provides an overview of IBD-specific PROMs and their items. The results of the content comparison provide valuable information to facilitate and account for the selection of appropriate PROMs for different purposes of data collection in clinical and research settings.

Original languageEnglish
Pages (from-to)507-517
Number of pages11
JournalJournal of Crohn's and Colitis
Volume6
Issue number5
DOIs
StatePublished - Jun 2012
Externally publishedYes

Keywords

  • Crohn disease
  • Inflammatory bowel diseases
  • International Classification of Functioning, Disability and Health
  • Review
  • Systematic
  • Ulcerative colitis

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