Systematic review of health-related quality of life measures for inflammatory bowel disease

J Crohns Colitis. 2015 Mar;9(3):284-92. doi: 10.1093/ecco-jcc/jjv002. Epub 2015 Jan 9.


Background and aim: Several measures have been developed to assess the health-related quality of life [HRQoL] of patients with inflammatory bowel disease [IBD]. Our aim is to systematically review the HRQoL measures specific for patients with IBD and to appraise their measurement properties and methodological quality.

Methods: We searched the PubMed, Embase, and PsycINFO databases for original articles describing the development and/or evaluation of one or more of the measurement properties [e.g. internal consistency, reliability, validity, responsiveness] of HRQoL measures specific for IBD. We assessed the measurement properties and examined the methodological quality of the measurement properties of each instrument using a standardized checklist.

Results: We examined the full text of 75 articles that we deemed potentially eligible and identified 10 disease-specific HRQoL measures in IBD that covered different aspects of patients' lives. Internal consistency, construct validity, and content validity were the commonly evaluated measurement properties. Seven HRQoL measures scored positive for at least four of eight measurement properties. The majority of studies were rated as 'fair' to 'poor' when assessing their methodology quality. The most established HRQoL measure in the literature was the Inflammatory Bowel Disease Questionnaire [IBDQ].

Conclusions: Most of the included HRQoL measures did not include all the required measurement properties or had a problem with their methodological quality. The most widely used and validated measure was the IBDQ. Further validation studies are required to support the use of other HRQoL measures.

Keywords: Crohn’s disease; Patient-reported outcome measures; inflammatory bowel disease; quality of life; ulcerative colitis.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review
  • Systematic Review

MeSH terms

  • Humans
  • Inflammatory Bowel Diseases*
  • Psychometrics
  • Quality of Life*
  • Reproducibility of Results
  • Surveys and Questionnaires