Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties

Abstract

BackgroundThis review aims to critically appraise and compare the measurement properties of inflammatory bowel disease (IBD)-specific health-related quality of life instruments.MethodsMedline, EMBASE and ISI Web of Knowledge were searched from their inception to May 2016. IBD-specific instruments for patients with Crohn’s disease, ulcerative colitis or IBD were enrolled. The basic characteristics and domains of the instruments were collected. The methodological quality of measurement properties and measurement properties of the instruments were assessed.ResultsFifteen IBD-specific instruments were included, which included twelve instruments for adult IBD patients and three for paediatric IBD patients. All of the instruments were developed in North American and European countries. The following common domains were identified: IBD-related symptoms, physical, emotional and social domain. The methodological quality was satisfactory for content validity; fair in internal consistency, reliability, structural validity, hypotheses testing and criterion validity; and poor in measurement error, cross-cultural validity and responsiveness. For adult IBD patients, the IBDQ-32 and its short version (SIBDQ) had good measurement properties and were the most widely used worldwide. For paediatric IBD patients, the IMPACT-III had good measurement properties and had more translated versions.ConclusionsMost methodological quality should be promoted, especially measurement error, cross-cultural validity and responsiveness. The IBDQ-32 was the most widely used instrument with good reliability and validity, followed by the SIBDQ and IMPACT-III. Further validation studies are necessary to support the use of other instruments.Electronic supplementary materialThe online version of this article (10.1186/s12955-017-0753-2) contains supplementary material, which is available to authorized users.

Heterogeneity in Definitions of Efficacy and Safety Endpoints for Clinical Trials of Crohn’s Disease: A Systematic Review

“…Several other inflammatory bowel disease-specific instruments for assessing QoL exist, evaluating physical, emotional, and social function in addition to symptom burden, but whether these are sufficiently valid and responsive for use as RCT endpoints remains unclear. 131 Other PROs assessing CD or ulcerative colitis (UC) disease activity have been developed but not yet incorporated as RCT endpoints and thus not captured in this review. de Jong et al 132 have recently identified 20 different PRO measures, which are categorized as those monitoring disease activity and those evaluating patient perspectives on disease control and QoL.…”

Associations between disease activity, social support and health-related quality of life in patients with inflammatory bowel diseases: the mediating role of psychological symptoms

“…The Inflammatory Bowel Disease Questionnaire (IBDQ) is the most widely used disease-specific instrument designed and recommended to assess HRQoL in patients with IBD [11,25]. It was initially developed by Guyatt et al in 1989 [26], and now has been translated into and cross-culturally adapted in several different language versions.…”

The Inflammatory Bowel Disease Questionnaire in Randomized Controlled Trials of Treatment for Ulcerative Colitis: Systematic Review and Meta-Analysis

“…To complement the disease activity indices, UC trials often include endpoints capturing change in patients' HRQoL, with the most frequently used instrument being the 32-item Inflammatory Bowel Disease Questionnaire (IBDQ-32). [7][8][9] The IBDQ-32 captures the patient's experience of IBD on 4 domains of functioning and well-being: bowel and systemic symptoms; and emotional and social function. 10 Reviews of the measurement properties of the IBDQ-32 have found evidence supporting its reliability, content validity, construct validity, and responsiveness.…”