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ID

37576

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 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

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

August 8, 2019

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License

Creative Commons BY-NC 3.0
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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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