ID

40626

Description

INFLAMMATORY BOWEL DISEASE DATA COLLECTION Version 1.0.1 Revised April 10th, 2017 Based mainly on the above version, additions/modifications August 2019 www.ichom.org Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. Conditions Covered: An adult (>16) with a diagnosis of Inflammatory Bowel Disease (IBD) including Crohn’s disease, ulcerative colitis and indeterminate colitis (or IBD unclassified) Treatment Approaches: Medical | Surgical | Supportive This ODM-file contains Patient reported Forms. Timepoints: Baseline, 6 months and anually. Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc. Survey used: IBD-Control PROM : IBD-Control is made available to the IBD community without license or fees, but the authors retain copyright and request that the original paper is cited in any published output. For more details, see: Bodger et al. Development and validation of a rapid, generic measure of disease control from the patient’s perspective: the IBD-control questionnaire. Gut 2014;63(7):1092-102. Please note, only some questions of the IBD-Control questionnaire are asked, therefore a total score is not applicable or requested within this guide. ICHOM was supported for this standard set by Oxford Academic Health Science Network (partly funded by AbbVie). Kim AH, Roberts C, Feagan BG, et al. Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease — an International, Cross-disciplinary Consensus. Journal of Crohn's and Colitis. 2017;1–11. doi:10.1093/ecco-jcc/jjx161 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

www.ichom.org

Keywords

Versions (3)
  1. 7/30/18 7/30/18 - Sarah Riepenhausen
  2. 8/8/19 8/8/19 - Sarah Riepenhausen
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

DOI

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License

Creative Commons BY-NC 4.0
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ICHOM Inflammatory Bowel Disease

English

Outcome (Patient reported)

1 forms  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number.
Description

This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution. INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution

Data type

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
Description

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Symptoms, function and quality of life
Description

Symptoms, function and quality of life

Alias
UMLS CUI-1
C1457887
UMLS CUI-2
C0542341
UMLS CUI-3
C0034380
Do you believe your IBD has been well controlled in the past two weeks?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C2911690
UMLS CUI [2,2]
C4288440
Do you believe your current treatment is useful in controlling your IBD?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C2911690
UMLS CUI [2,2]
C0087111
Over the past 2 weeks, have your bowel symptoms been getting worse, getting better or not changed?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C1457887
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you miss any planned activities because of IBD? (e.g. attending school/college, going to work or a social event)
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C3174606
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you wake up at night because of symptoms of IBD?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C2875252
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you suffer from significant pain or discomfort?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C2737161
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you often feel lacking in energy (or fatigued) (by 'often' we mean more than half of the time)
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C0015672
UMLS CUI [2,2]
C4288440
In the past 2 weeks, did you feel anxious or depressed because of your IBD?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C0003467
UMLS CUI [2,2]
C4288440
UMLS CUI [3,1]
C0497307
UMLS CUI [3,2]
C4288440
In the past 2 weeks, did you think you needed a change to your treatment?
Description

For all IBD-Control items please note the response option number does not correlate with the scoring guide for the IBD-Control tool and is for coding only. INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C0034394
UMLS CUI [2,1]
C1299575
UMLS CUI [2,2]
C1514873
UMLS CUI [2,3]
C4288440
Do you experience symptoms from any of the following fistula? 1=No fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answers, separate multiple answers with (;) (here: multiple boolean items)

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [2,1]
C0016169
UMLS CUI [2,2]
C1298908
Do you experience symptoms from any of the following fistula? 2=Perianal fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [2]
C0267561
Do you experience symptoms from any of the following fistula? 3=Rectovaginal fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [2]
C0034895
Do you experience symptoms from any of the following fistula? 4=Enterocutaneous fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [2]
C0341318
Do you experience symptoms from any of the following fistula? 5=Other fistula
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0021390
UMLS CUI [1,2]
C1457887
UMLS CUI [1,3]
C0016169
UMLS CUI [1,4]
C0205394
If any weight loss has occurred, was this intentional? (i.e. were you trying to lose weight?)
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1262477
UMLS CUI [1,2]
C1283828
Survival and Disease Control
Description

Survival and Disease Control

Alias
UMLS CUI-1
C1148433
UMLS CUI-2
C0012634
UMLS CUI-3
C0243148
In the last 6 months, my disease has been
Description

INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Patient reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C2707252
UMLS CUI [1,2]
C0021390
UMLS CUI [1,3]
C0747307
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Similar models

Outcome (Patient reported)

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number.
integer
C1269815 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Symptoms, function and quality of life
C1457887 (UMLS CUI-1)
C0542341 (UMLS CUI-2)
C0034380 (UMLS CUI-3)
Item
Do you believe your IBD has been well controlled in the past two weeks?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2911690 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
Do you believe your IBD has been well controlled in the past two weeks?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
Do you believe your current treatment is useful in controlling your IBD?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2911690 (UMLS CUI [2,1])
C0087111 (UMLS CUI [2,2])
Question 1b of the IBD-Control
Code List
Do you believe your current treatment is useful in controlling your IBD?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
CL Item
Please tick if not currently taking any treatment (3)
C0746467 (UMLS CUI-1)
C1298908 (UMLS CUI-2)
(Comment:en)
Item
Over the past 2 weeks, have your bowel symptoms been getting worse, getting better or not changed?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C1457887 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 2 of the IBD-Control
Code List
Over the past 2 weeks, have your bowel symptoms been getting worse, getting better or not changed?
CL Item
Better (0)
C0332272 (UMLS CUI-1)
(Comment:en)
CL Item
No change (1)
C0442739 (UMLS CUI-1)
(Comment:en)
CL Item
Worse (2)
C1457868 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you miss any planned activities because of IBD? (e.g. attending school/college, going to work or a social event)
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C3174606 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you miss any planned activities because of IBD? (e.g. attending school/college, going to work or a social event)
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you wake up at night because of symptoms of IBD?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2875252 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you wake up at night because of symptoms of IBD?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you suffer from significant pain or discomfort?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2737161 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you suffer from significant pain or discomfort?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you often feel lacking in energy (or fatigued) (by 'often' we mean more than half of the time)
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C0015672 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you often feel lacking in energy (or fatigued) (by 'often' we mean more than half of the time)
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you feel anxious or depressed because of your IBD?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C0003467 (UMLS CUI [2,1])
C4288440 (UMLS CUI [2,2])
C0497307 (UMLS CUI [3,1])
C4288440 (UMLS CUI [3,2])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you feel anxious or depressed because of your IBD?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Item
In the past 2 weeks, did you think you needed a change to your treatment?
integer
C0021390 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C1299575 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C4288440 (UMLS CUI [2,3])
Question 1a of the IBD-Control
Code List
In the past 2 weeks, did you think you needed a change to your treatment?
CL Item
Yes (0)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (1)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Not sure (2)
C3844332 (UMLS CUI-1)
(Comment:en)
Symptoms from fistula: No fistula
Item
Do you experience symptoms from any of the following fistula? 1=No fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0016169 (UMLS CUI [2,1])
C1298908 (UMLS CUI [2,2])
Symptoms from perianal fistula: perianal fistula
Item
Do you experience symptoms from any of the following fistula? 2=Perianal fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0267561 (UMLS CUI [2])
Symptoms from fistula: Rectovaginal fistula
Item
Do you experience symptoms from any of the following fistula? 3=Rectovaginal fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0034895 (UMLS CUI [2])
Symptoms from fistula: Enterocutaneous fistula
Item
Do you experience symptoms from any of the following fistula? 4=Enterocutaneous fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0341318 (UMLS CUI [2])
Symptoms from fistula: other fistula
Item
Do you experience symptoms from any of the following fistula? 5=Other fistula
boolean
C0021390 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0016169 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,4])
Item
If any weight loss has occurred, was this intentional? (i.e. were you trying to lose weight?)
integer
C1262477 (UMLS CUI [1,1])
C1283828 (UMLS CUI [1,2])
Intentional weight loss
Code List
If any weight loss has occurred, was this intentional? (i.e. were you trying to lose weight?)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (2)
C1298908 (UMLS CUI-1)
(Comment:en)
Item Group
Survival and Disease Control
C1148433 (UMLS CUI-1)
C0012634 (UMLS CUI-2)
C0243148 (UMLS CUI-3)
Item
In the last 6 months, my disease has been
integer
C2707252 (UMLS CUI [1,1])
C0021390 (UMLS CUI [1,2])
C0747307 (UMLS CUI [1,3])
Disease activity
Code List
In the last 6 months, my disease has been
CL Item
Constantly active giving me symptoms every day (0)
C0205177 (UMLS CUI-1)
C0332173 (UMLS CUI-2)
C1457887 (UMLS CUI-3)
(Comment:en)
CL Item
Often active, giving me symptoms most days (1)
C0332183 (UMLS CUI-1)
C0205177 (UMLS CUI-2)
C3840699 (UMLS CUI-3)
C1457887 (UMLS CUI-4)
(Comment:en)
CL Item
Sometimes active, giving me symptoms on some days (for instance 1–2 days/week) (2)
C1998882 (UMLS CUI-1)
C0205177 (UMLS CUI-2)
C3844183 (UMLS CUI-3)
C1457887 (UMLS CUI-4)
(Comment:en)
CL Item
Occasionally active, giving me symptoms 1–2 days/month; (3)
C1998882 (UMLS CUI-1)
C0205177 (UMLS CUI-2)
C3844154 (UMLS CUI-3)
C1457887 (UMLS CUI-4)
(Comment:en)
CL Item
Rarely active, giving me symptoms on a few days in the past 6 months (4)
C0522498 (UMLS CUI-1)
C0205177 (UMLS CUI-2)
C0522498 (UMLS CUI-3)
C1457887 (UMLS CUI-4)
(Comment:en)
CL Item
I was well in the past 6 months, what I consider a remission or absence of symptoms (5)
C2266644 (UMLS CUI-1)
C0544452 (UMLS CUI-2)
C0231221 (UMLS CUI-3)
(Comment:en)
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