The Inflammatory Bowel Disease Symptom Inventory: A Patient-report Scale for Research and Clinical Application

Abstract

Objectives Existing measures of inflammatory bowel disease (IBD) symptoms are not well suited to self-report, inadequate in measurement properties, insufficiently specific, or burdensome for brief or repeated administration. We aimed to develop a patient-reported outcome measure to assess a broader range of IBD symptoms. Methods The IBD Symptoms Inventory (IBDSI) was developed by adapting symptom items from existing clinician-rated or diary-format inventories; after factor analysis, 38 items were retained on 5 subscales: bowel symptoms, abdominal discomfort, fatigue, bowel complications, and systemic complications. Participants completed the IBDSI and other self-report measures during a clinic visit. A nurse administered the Harvey Bradshaw Index (HBI) for Crohn’s disease (CD) or the Powell-Tuck Index (PTI) for ulcerative colitis (UC), and a gastroenterologist completed a global assessment of disease severity (PGA). Results The 267 participants with CD (n = 142) or UC (n = 125), ages 18 to 81 (M = 43.4, SD = 14.6) were 58.1% female, with a mean disease duration of 13.9 (SD = 10.5) years. Confirmatory factor analysis supported the 5 subscales. The total scale and subscales showed good reliability and significant correlations with self-report symptom and IBD quality of life measures, the HBI, PTI, and PGA. Conclusions The IBDSI showed strong measurement properties: a supported factor structure, very good internal consistency, convergent validity, and excellent sensitivity and specificity to clinician-rated active disease. Self-report HBI and PTI items, when extracted from this measure, produced scores comparable to clinician-administered versions. The 38-item IBDSI, or 26-item short form, can be used as a brief survey of common IBD symptoms in clinic or research settings.

Systematic Review of Development and Content Validity of Patient-reported Outcome Measures in Inflammatory Bowel Disease: Do We Measure What We Measure?

“… 53 Four PROMs report to measure ‘CD disease activity’ 51 , 54–56 and one predicts mucosal inflammation in CD. 53 The remaining four of 18 report to measure ‘IBD disease activity’ 57 , 58 or ‘disease control’ in IBD patients. 59 Nineteen PROMs report to measure a concept of ‘health-related quality of life’, ‘health status’, or ‘disease burden’.…”

“…In all ‘disability’ PROMs the four domains were represented. Self-report disease activity PROMs mainly featured items on physical aspects, except for the p-SCCAI, 46 IBDSI-LF, 58 and IBDSI-SF 58 which have items on function-related aspects, and the IBD-C 59 with items in each group except social aspects. The latter measures the distinct construct ‘disease control’ instead of ‘disease activity’, possibly explaining these findings.…”

“…For self-report disease activity, the IBD-C 59 had, albeit with low quality evidence based on the development study of doubtful quality and no content validity studies, the highest evidence in its group. It is followed by the equally placed MIBDI, 57 MIAH-CD, 53 IBDSI-LF, and IBDSI-SF, 58 and then by GIBDI-CD and GIBDI-UC 56 with very low quality evidence due to inadequate development studies and no content validity studies. Of the remaining PROMs with sufficient ratings for all three aspects, only the IBDDI-SR, 44 IBDDI-14-s, 42 , 43 IBDQ-30, 69 , 70 and IBDQ-36 74 had moderate quality of evidence for one or two of the aspects, generated by content validity studies of doubtful quality; the rest had a low or very low quality.…”

Application of Artificial Intelligence Modeling Technology Based on Multi-Omics in Noninvasive Diagnosis of Inflammatory Bowel Disease

“…Inflammatory bowel disease (IBD) is a chronic and incurable disease with a high incidence rate, which seriously affects patients’ health and life span. 1 , 2 IBD mainly includes Crohn’s disease (CD) and ulcerative colitis (UC). 3 Intestinal tract is the largest immune organ in human body.…”

The Role of MicroRNAs upon Epithelial-to-Mesenchymal Transition in Inflammatory Bowel Disease

“…In addition, the importance of the microbiome and lifestyle is indisputable in the pathogenesis of IBD, but these circumstance cause disease merely in genetically susceptible persons [9]. Over the intestinal and systemic complications [10,11], long-lasting inflammation increases the risk of colorectal cancer (CRC), and these malignancies account for 10 to 15% of deaths in IBD patients [12]. Prolonged inflammation contributes to tumorigenesis in multiple manners [13]: proinflammatory genes and pathways promote cancer niche formation [14], while regulatory microRNAs enhance the imbalance [15].…”