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

Kathryn A Sexton; John R Walker; Laura E Targownik; Lesley A Graff; Clove Haviva; Brooke E Beatie; Sarah K Petty; Matthew T Bernstein; Harminder Singh; Norine Miller; Charles N Bernstein

doi:10.1093/ibd/izz038

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

Inflamm Bowel Dis. 2019 Jul 17;25(8):1277-1290. doi: 10.1093/ibd/izz038.

Authors

Kathryn A Sexton^{1

2}, John R Walker^{1

2}, Laura E Targownik^{1

3}, Lesley A Graff^{1

2}, Clove Haviva^{1

4}, Brooke E Beatie⁴, Sarah K Petty⁴, Matthew T Bernstein^{2

4}, Harminder Singh³, Norine Miller¹, Charles N Bernstein^{1

3}

Affiliations

¹ Department of Inflammatory Bowel Disease Clinical and Research Centre, University of Manitoba, Winnipeg, Manitoba, Canada.
² Department of Clinical Health Psychology, University of Manitoba, Winnipeg, Manitoba, Canada.
³ Department of Internal Medicine, University of Manitoba, Winnipeg, Manitoba, Canada.
⁴ Department of Psychology, University of Manitoba, Winnipeg, Manitoba, Canada.

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.

Keywords: inflammatory bowel disease; measurement properties; self report; symptoms.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Aged
Aged, 80 and over
Female
Gastroenterologists / statistics & numerical data*
Humans
Inflammatory Bowel Diseases / diagnosis*
Inflammatory Bowel Diseases / physiopathology
Male
Middle Aged
Patient Reported Outcome Measures*
Quality of Life*
Reproducibility of Results
Self Report*
Severity of Illness Index*
Sickness Impact Profile*
Surveys and Questionnaires*
Young Adult

Grants and funding

CIHR/Canada