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Protocol - Health Impact of Inflammatory Bowel Disease

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Description:

The Short Inflammatory Bowel Disease Questionnaire (SIBDQ) obtains a clinical status in respondents who have been diagnosed with inflammatory bowel disease (IBD) (e.g., Crohn's disease and ulcerative colitis) using measures of health-related quality of life over the past 2 weeks. The protocol contains 10 questions that query the well-being of respondents in four realms relevant to IBD's impact on their lives: emotional, social, bowel, and work. The questionnaire can be completed in less than 5 minutes.

Protocol:

Summary of the Short Inflammatory Bowel Disease Questionnaire (SIBDQ):

The Short Inflammatory Bowel Disease Questionnaire (SIBDQ) consists of 10 questions taken directly from the original 32-question Inflammatory Bowel Disease Questionnaire (IBDQ). The SIBDQ consists of questions scored in four domains: bowel symptoms, emotional health, systemic systems, and social function. Respondents are asked to provide a rating from 1 to 7 on quality-of-life measures during the last 2 weeks.

The questionnaire provides a score ranging from 10 (lowest score) to 70 (highest score). To obtain the score, tabulate the answers to each of the 10 questions; the value associated with the answer ranges from 1 to 7. Higher scores represent higher health-related quality of life with less impact from inflammatory bowel disease (IBD).

© Copyright, McMaster University, Hamilton, Ontario, Canada

Protocol Name from Source:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

Personnel and Training Required
The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews.* The interviewer should be trained to prompt respondents further if a "don't know" response is provided. *There are multiple modes to administer this question (e.g., paper-and-pencil questionnaire, computer-assisted interviews, and telephone interviews).
Equipment Needs
While the source instrument was developed to be administered by paper-and-pencil questionnaire, the PhenX Working Group acknowledges that these questions can be administered in a computerized format or via telephone interview.
Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered or interviewer-administered questionnaire

Life Stage:

Adult

Participants:

Adults, aged 18 years and older

Specific Instructions:
Because the Short Inflammatory Bowel Disease Questionnaire (SIBDQ) should be administered to people who have already been diagnosed with Inflammatory Bowel Disease (IBD), the Gastrointestinal Working Group recommends including a filter question prior to administering the questionnaire. The filter question should ask if the subject has ever been diagnosed with inflammatory bowel disease (IBD), ulcerative colitis, or Crohn's disease. Administer the SIBDQ only if the subject answers "Yes" to this question. To further classify an IBD diagnosis, the Gastrointestinal Working Group (WG) recommends using the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) IBD Genetics Consortium Phenotype Form in the Supplemental Information section for the Gastrointestinal WG.
Selection Rationale

The Short Inflammatory Bowel Disease Questionnaire (SIBDQ) is a simple form that is valid for both Crohn's disease and ulcerative colitis. It is a shorter version of the Inflammatory Bowel Disease Questionnaire, which contains a larger number of questions (32 questions) and takes longer to complete and tally scores. The SIBDQ can be used in community-based settings and in academic facilities, requires no additional expertise on the part of the staff administering the questionnaire, and is readily accomplished by patients. The telephone adaptation of the questionnaire makes the acquisition of data from patients at remote sites also an advantage, compared with forms that would require face-to-face contact, physical examination, endoscopic assessment, or measures of blood for completion. The translation of the SIBDQ into multiple languages may facilitate studies across population groups.

Language

English, German, Mandarin Chinese, Spanish

Standards
StandardNameIDSource
Common Data Elements (CDE) Person Inflammatory Bowel Disease Quality of Life Assessment Score 3163056 CDE Browser
Logical Observation Identifiers Names and Codes (LOINC) Health impact of inflamm bowel proto 62965-9 LOINC
Derived Variables

None

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

Irvine, E. J., Zhou, Q., & Thompson, A. K. (1996.) The Short Inflammatory Bowel Disease Questionnaire: A quality of life instrument for community physicians managing inflammatory bowel disease. CCRPT Investigators. Canadian Crohn's Relapse Prevention Trial. American Journal of Gastroenterology, 91(8), 1571–1578.

The Short Inflammatory Bowel Disease Questionnaire (SIBDQ), authored by Dr. Jan Irvine et al., is the copyright of McMaster University (Copyright © 1989, McMaster University). The SIBDQ is available under the terms of a license from McMaster University and must not be copied, distributed, or used in any way without the prior written consent of McMaster University.

Contact the McMaster Industry Liaison Office (MILO) for licensing details.

E-mail: milo@mcmaster.ca

General References

Guyatt, G., Mitchell, A., Irvine, E. J., Singer, J., Williams, N., Goodacre, R., & Tompkins, C. (1989). A new measure of health status for clinical trials in inflammatory bowel disease.Gastroenterology, 96,804–810.

Lam, M. Y., Lee, H., Bright, R., Korzenik, J. R., & Sands, B. E. (2009). Validation of interactive voice response system administration of the Short Inflammatory Bowel Disease Questionnaire. Inflammatory Bowel Disease, 15(4), 599607.

Protocol ID:

190701

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX190701000000 Protocol 190701 - proprietary. Check DCW for contact. 4 N/A
Research Domain Information
Measure Name:

Health Impact of Inflammatory Bowel Disease

Release Date:

December 13, 2010

Definition

This measure obtains a clinical status in respondents who have been diagnosed with inflammatory bowel disease (IBD) (e.g., Crohn's disease and ulcerative colitis) using measures of health-related quality of life over the past 2 weeks.

Purpose

This measure is used to assess a person's quality of life over a 2-week period in regard to inflammatory bowel disease (IBD) and to understand the severity of the condition.

Keywords

Gastrointestinal, IBD, inflammatory bowel disease, Crohn's disease, ulcerative colitis, quality of life, QOL, proprietary, Gastrointestinal