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

Sexton KA1,2, Walker JR1,2, Targownik LE1,3, Graff LA1,2, Haviva C1,4, Beatie BE4, Petty SK4, Bernstein MT2,4, Singh H3, Miller N1, Bernstein CN1,3. Inflamm Bowel Dis. 2019 Mar 27. pii: izz038. doi: 10.1093/ibd/izz038. [Epub ahead of print]


Author information

Department of Inflammatory Bowel Disease Clinical and Research Centre, University of Manitoba, Winnipeg, Manitoba, Canada.

Department of Clinical Health Psychology, University of Manitoba, Winnipeg, Manitoba, Canada.

Department of Internal Medicine, University of Manitoba, Winnipeg, Manitoba, Canada.

Department of Psychology, University of Manitoba, Winnipeg, Manitoba, Canada.


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: bowelsymptoms, 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.

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