COSMIN database

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

Alrubaiy, L., Rikaby, I., Dodds, P., Hutchings, H. A., and Williams, J. G.
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.
J Crohns Colitis
1876-4479 (Electronic)
Publication year:
Biological and physiological variables:
Biological and physiological variables
Symptom status:
Physical state
Adults (18-65)
Children (0-18)
Seniors (65+)
Diseases of and symptoms related to the digestive system
PRO / non-PRO:
Non-patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
6 - Clinical rating scales
9 - Laboratory tests
Cape Town Index (OR: South African Index)
CDAI - Crohn’s Disease Activity Index
Clinical Activity Index
DP-6 - Daily Practice Composite Score
Endoscopic—Clinical Correlation Index
Fistula Drainage Assessment
German Inflammatory Bowel Disease Activity Index
HBI - Harvey-Bradshaw Index (OR: Simple Index) (versions: pHBI - patient HBI; HBImApp - HBI mobile App)
IBD-C - Inflammatory Bowel Disease control questionnaire
Improvement Based on Individual Symptoms Score
Lichtiger Index
Mayo Clinic Activity Score
MIBDI - Manitoba Inflammatory Bowel Disease Index
Perianal Crohn’s Disease Activity Index
Perianal Disease Activity Index
PGA - Physician Global Assessment
Powell-Tuck Index [alias: St. Mark’s Index]
Seo Score
Simple Clinical Colitis Severity Index
Truelove and Witts Severity Index
Ulcerative Colitis Clinical Severity Score
van Hees Index