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ID

40644

Descrição

INFLAMMATORY BOWEL DISEASE 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 Clinician Reported Outcome Factors. Timepoints: Baseline and Follow-up. Surveys 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

Palavras-chave

Versões (3)
  1. 24/07/2018 24/07/2018 - Sarah Riepenhausen
  2. 08/08/2019 08/08/2019 - Sarah Riepenhausen
  3. 30/04/2020 30/04/2020 - Sarah Riepenhausen
Titular dos direitos

ICHOM

Transferido a

30 de abril de 2020

DOI

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Licença

Creative Commons BY-NC 4.0
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    ICHOM Inflammatory Bowel Disease

    Inglês

    Outcome (Clinican reported)

    1 Formulários  
    Administrative Data
    Descrição

    Administrative Data

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

    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

    Tipo de dados

    integer

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

    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.

    Tipo de dados

    text

    Alias
    UMLS CUI [1,1]
    C0439564
    UMLS CUI [1,2]
    C1442488
    Disutility of care
    Descrição

    Disutility of care

    Alias
    UMLS CUI-1
    C0231185
    UMLS CUI-2
    C0086388
    UMLS CUI-3
    C0021390
    Please indicate whether prednisolone has been used in the last 12 months
    Descrição

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

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0281991
    UMLS CUI [1,2]
    C3887293
    Indicate whether the patient experienced a (unexpected or expected) complication whist during IBD intervention (this can be any type of intervention) or 3 months following intervention
    Descrição

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

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0009566
    UMLS CUI [1,2]
    C0021390
    UMLS CUI [1,3]
    C0184661
    If a complication occurred, indicate the outcome of that complication 0 = No further intervention required
    Descrição

    INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2,1]
    C1298908
    UMLS CUI [2,2]
    C1706712
    If a complication occurred, indicate the outcome of that complication 1 = Surgical intervention required
    Descrição

    INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2]
    C0549433
    If a complication occurred, indicate the outcome of that complication 2 = Radiological intervention required
    Descrição

    INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2]
    C2733119
    If a complication occurred, indicate the outcome of that complication 3 = Endoscopic intervention required
    Descrição

    INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2,1]
    C0014245
    UMLS CUI [2,2]
    C0184661
    If a complication occurred, indicate the outcome of that complication 4 = Medical intervention required
    Descrição

    INCLUSION CRITERIA: All Patients with a complication in COMPOCCUR TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Multiple answers. Separate multiple answers with (;)

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2]
    C0184661
    Did the complication lead to prolonged hospitalization
    Descrição

    (i.e. longer than reasonably expected) INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Single Answer

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2]
    C0745041
    If the complication lead to prolonged hospitalization, indicate the total number of days the patient was hospitalized for
    Descrição

    INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

    Tipo de dados

    integer

    Unidades de medida
    • days
    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2,1]
    C0745041
    UMLS CUI [2,2]
    C3640790
    days
    Did the complication lead to an unplanned admission
    Descrição

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

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2,1]
    C0030673
    UMLS CUI [2,2]
    C3854240
    If the complication lead to an unplanned admission, indicate the total length of stay for all unplanned admissions due to complication within 1 year
    Descrição

    INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

    Tipo de dados

    integer

    Unidades de medida
    • days
    Alias
    UMLS CUI [1,1]
    C0184788
    UMLS CUI [1,2]
    C0009566
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [2,1]
    C0030673
    UMLS CUI [2,2]
    C3854240
    UMLS CUI [2,3]
    C3640790
    UMLS CUI [2,4]
    C0439810
    days
    Healthcare utilization
    Descrição

    Healthcare utilization

    Alias
    UMLS CUI-1
    C0042153
    UMLS CUI-2
    C0086388
    How many times has the person with inflammatory bowel disease been admitted and readmitted to hospital in the last 12 months?
    Descrição

    INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical RESPONSE OPTIONS: Admissions Readmissions

    Tipo de dados

    integer

    Unidades de medida
    • times
    Alias
    UMLS CUI [1,1]
    C0600290
    UMLS CUI [1,2]
    C0449788
    UMLS CUI [1,3]
    C3887293
    UMLS CUI [2,1]
    C0184666
    UMLS CUI [2,2]
    C0449788
    UMLS CUI [2,3]
    C4086728
    times
    How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months (IBD-related)?
    Descrição

    INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

    Tipo de dados

    integer

    Unidades de medida
    • times
    Alias
    UMLS CUI [1,1]
    C0184666
    UMLS CUI [1,2]
    C0449788
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [1,4]
    C3887293
    times
    How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months ( IBD-related) for a planned admission?
    Descrição

    INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

    Tipo de dados

    integer

    Unidades de medida
    • times
    Alias
    UMLS CUI [1,1]
    C0184666
    UMLS CUI [1,2]
    C1301732
    UMLS CUI [1,3]
    C0449788
    UMLS CUI [1,4]
    C0021390
    UMLS CUI [1,5]
    C3887293
    times
    How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months (IBD-related) for a unplanned admission?
    Descrição

    INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

    Tipo de dados

    integer

    Unidades de medida
    • times
    Alias
    UMLS CUI [1,1]
    C0184666
    UMLS CUI [1,2]
    C3854240
    UMLS CUI [1,3]
    C0449788
    UMLS CUI [1,4]
    C0021390
    UMLS CUI [1,5]
    C3887293
    times
    Total number of emergency room or emergency department visits realted to IBD within 1 year
    Descrição

    INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0449788
    UMLS CUI [1,2]
    C0583237
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [1,4]
    C3887293
    Survival and Disease Control
    Descrição

    Survival and Disease Control

    Alias
    UMLS CUI-1
    C1148433
    UMLS CUI-2
    C0012634
    UMLS CUI-3
    C0243148
    Indicate if there is evidence of anaemia?
    Descrição

    Anaemia is defined by the WHO as a haemoglobin (at sea level) of <12.0 g/dl in non-pregnant women, <11.0g/dl in pregnant women and <13.5 g/dl in men INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Single Answer

    Tipo de dados

    integer

    Alias
    UMLS CUI [1]
    C0002871
    Is the patient clinically in remission?
    Descrição

    This could be determined using any recognised assessment or questionnaire. INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Single Answer

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0544452
    UMLS CUI [1,2]
    C0205210
    UMLS CUI [1,3]
    C0021390
    Is the patient in biological remission?
    Descrição

    This could be determined using any approach, e.g. endoscopically, radiological, histologically INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Single Answer

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0544452
    UMLS CUI [1,2]
    C0205460
    UMLS CUI [1,3]
    C0021390
    If the patient is in biological remission, how was this determined? 0= Endoscopically (e.g. endoscopy, colonoscopy)
    Descrição

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

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0544452
    UMLS CUI [1,2]
    C0205460
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [1,4]
    C2911685
    UMLS CUI [2]
    C0014245
    If the patient is in biological remission, how was this determined? 1= Radiologically (e.g. fluoroscopy, CT, MRI)
    Descrição

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

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0544452
    UMLS CUI [1,2]
    C0205460
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [1,4]
    C2911685
    UMLS CUI [2]
    C0011923
    If the patient is in biological remission, how was this determined? 2= Biochemistry (e.g. CRP, faecal calprotectin)
    Descrição

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

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0544452
    UMLS CUI [1,2]
    C0205460
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [1,4]
    C2911685
    UMLS CUI [2]
    C0005477
    If the patient is in biological remission, how was this determined? 3=Histologically (tissue analysis)
    Descrição

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

    Tipo de dados

    boolean

    Alias
    UMLS CUI [1,1]
    C0544452
    UMLS CUI [1,2]
    C0205460
    UMLS CUI [1,3]
    C0021390
    UMLS CUI [1,4]
    C2911685
    UMLS CUI [2]
    C0205462
    Has colorectal cancer been diagnosed?
    Descrição

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

    Tipo de dados

    integer

    Alias
    UMLS CUI [1]
    C0009402
    If colorectal cancer has been diagnosed, had colorectal dysplasia previously been diagnosed?
    Descrição

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

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0555952
    UMLS CUI [1,2]
    C0334044
    UMLS CUI [1,3]
    C0332152
    UMLS CUI [1,4]
    C0009402
    Patient died, regardless of cause
    Descrição

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

    Tipo de dados

    integer

    Alias
    UMLS CUI [1]
    C0011065
    Indicate the date of death
    Descrição

    INCLUSION CRITERIA: All Patients TIMING: Baseline and Follow-Up REPORTING SOURCE: Clinician reported TYPE: Numerical

    Tipo de dados

    date

    Unidades de medida
    • DD/MM/YYYY
    Alias
    UMLS CUI [1]
    C1148348
    DD/MM/YYYY
    Indicate if death was attributable to IBD
    Descrição

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

    Tipo de dados

    integer

    Alias
    UMLS CUI [1,1]
    C0007465
    UMLS CUI [1,2]
    C0021390
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    Outcome (Clinican reported)

    1 Formulários
    Name
    Tipo
    Description | Question | Decode (Coded Value)
    Tipo de dados
    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
    Disutility of care
    C0231185 (UMLS CUI-1)
    C0086388 (UMLS CUI-2)
    C0021390 (UMLS CUI-3)
    Item
    Please indicate whether prednisolone has been used in the last 12 months
    integer
    C0281991 (UMLS CUI [1,1])
    C3887293 (UMLS CUI [1,2])
    Steroid use
    Code List
    Please indicate whether prednisolone has been used in the last 12 months
    CL Item
    No use of prednisolone in the last 12 months (0)
    C0032950 (UMLS CUI-1)
    C3887293 (UMLS CUI-2)
    C1298908 (UMLS CUI-3)
    (Comment:en)
    CL Item
    Use of prednisolone in the last 12 months of less than 3 months total duration (1)
    C0032950 (UMLS CUI-1)
    C3887293 (UMLS CUI-2)
    C0449238 (UMLS CUI-3)
    C1806781 (UMLS CUI-4)
    (Comment:en)
    CL Item
    Use of prednisolone in the last 12 months for more than 3 months total duration (2)
    C0032950 (UMLS CUI-1)
    C3887293 (UMLS CUI-2)
    C0449238 (UMLS CUI-3)
    C0443252 (UMLS CUI-4)
    (Comment:en)
    Item
    Indicate whether the patient experienced a (unexpected or expected) complication whist during IBD intervention (this can be any type of intervention) or 3 months following intervention
    integer
    C0009566 (UMLS CUI [1,1])
    C0021390 (UMLS CUI [1,2])
    C0184661 (UMLS CUI [1,3])
    Occurrence of a complication
    Code List
    Indicate whether the patient experienced a (unexpected or expected) complication whist during IBD intervention (this can be any type of intervention) or 3 months following intervention
    CL Item
    No complication occurred (0)
    C0009566 (UMLS CUI-1)
    C1298908 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Yes, complication occurred (1)
    C0009566 (UMLS CUI-1)
    C1705108 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Outcome of the complication: no further intervention
    Item
    If a complication occurred, indicate the outcome of that complication 0 = No further intervention required
    boolean
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C1298908 (UMLS CUI [2,1])
    C1706712 (UMLS CUI [2,2])
    Outcome of the complication: surgical intervention
    Item
    If a complication occurred, indicate the outcome of that complication 1 = Surgical intervention required
    boolean
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C0549433 (UMLS CUI [2])
    Outcome of the complication: radiological intervention
    Item
    If a complication occurred, indicate the outcome of that complication 2 = Radiological intervention required
    boolean
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C2733119 (UMLS CUI [2])
    Outcome of the complication: endoscopic intervention
    Item
    If a complication occurred, indicate the outcome of that complication 3 = Endoscopic intervention required
    boolean
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C0014245 (UMLS CUI [2,1])
    C0184661 (UMLS CUI [2,2])
    Outcome of the complication: medical intervention
    Item
    If a complication occurred, indicate the outcome of that complication 4 = Medical intervention required
    boolean
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C0184661 (UMLS CUI [2])
    Item
    Did the complication lead to prolonged hospitalization
    integer
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C0745041 (UMLS CUI [2])
    Outcome of the complication - hospitalization
    Code List
    Did the complication lead to prolonged hospitalization
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Outcome of the complication - hospitalization
    Item
    If the complication lead to prolonged hospitalization, indicate the total number of days the patient was hospitalized for
    integer
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C0745041 (UMLS CUI [2,1])
    C3640790 (UMLS CUI [2,2])
    Item
    Did the complication lead to an unplanned admission
    integer
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C0030673 (UMLS CUI [2,1])
    C3854240 (UMLS CUI [2,2])
    Outcome of the complication - hospitalization
    Code List
    Did the complication lead to an unplanned admission
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Outcome of the complication - unplanned admission days
    Item
    If the complication lead to an unplanned admission, indicate the total length of stay for all unplanned admissions due to complication within 1 year
    integer
    C0184788 (UMLS CUI [1,1])
    C0009566 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C0030673 (UMLS CUI [2,1])
    C3854240 (UMLS CUI [2,2])
    C3640790 (UMLS CUI [2,3])
    C0439810 (UMLS CUI [2,4])
    Item Group
    Healthcare utilization
    C0042153 (UMLS CUI-1)
    C0086388 (UMLS CUI-2)
    Admissions and readmissions to hospitals
    Item
    How many times has the person with inflammatory bowel disease been admitted and readmitted to hospital in the last 12 months?
    integer
    C0600290 (UMLS CUI [1,1])
    C0449788 (UMLS CUI [1,2])
    C3887293 (UMLS CUI [1,3])
    C0184666 (UMLS CUI [2,1])
    C0449788 (UMLS CUI [2,2])
    C4086728 (UMLS CUI [2,3])
    All IBD-related admission to hospitals
    Item
    How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months (IBD-related)?
    integer
    C0184666 (UMLS CUI [1,1])
    C0449788 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C3887293 (UMLS CUI [1,4])
    All IBD-related planned admissions to hospitals
    Item
    How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months ( IBD-related) for a planned admission?
    integer
    C0184666 (UMLS CUI [1,1])
    C1301732 (UMLS CUI [1,2])
    C0449788 (UMLS CUI [1,3])
    C0021390 (UMLS CUI [1,4])
    C3887293 (UMLS CUI [1,5])
    All IBD-related unplanned admissions to hospitals
    Item
    How many times has the patient been admitted (requiring at least an overnight stay) to a hospital/acute care facility in the last 12 months (IBD-related) for a unplanned admission?
    integer
    C0184666 (UMLS CUI [1,1])
    C3854240 (UMLS CUI [1,2])
    C0449788 (UMLS CUI [1,3])
    C0021390 (UMLS CUI [1,4])
    C3887293 (UMLS CUI [1,5])
    Total number of emergency room visits related to IBD
    Item
    Total number of emergency room or emergency department visits realted to IBD within 1 year
    integer
    C0449788 (UMLS CUI [1,1])
    C0583237 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C3887293 (UMLS CUI [1,4])
    Item Group
    Survival and Disease Control
    C1148433 (UMLS CUI-1)
    C0012634 (UMLS CUI-2)
    C0243148 (UMLS CUI-3)
    Item
    Indicate if there is evidence of anaemia?
    integer
    C0002871 (UMLS CUI [1])
    Outcome of the complication - hospitalization
    Code List
    Indicate if there is evidence of anaemia?
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Item
    Is the patient clinically in remission?
    integer
    C0544452 (UMLS CUI [1,1])
    C0205210 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    Outcome of the complication - hospitalization
    Code List
    Is the patient clinically in remission?
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Item
    Is the patient in biological remission?
    integer
    C0544452 (UMLS CUI [1,1])
    C0205460 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    Outcome of the complication - hospitalization
    Code List
    Is the patient in biological remission?
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Disease activity - method of determining biological remission: Endoscopy
    Item
    If the patient is in biological remission, how was this determined? 0= Endoscopically (e.g. endoscopy, colonoscopy)
    boolean
    C0544452 (UMLS CUI [1,1])
    C0205460 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C2911685 (UMLS CUI [1,4])
    C0014245 (UMLS CUI [2])
    Disease activity - method of determining biological remission: Radiological
    Item
    If the patient is in biological remission, how was this determined? 1= Radiologically (e.g. fluoroscopy, CT, MRI)
    boolean
    C0544452 (UMLS CUI [1,1])
    C0205460 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C2911685 (UMLS CUI [1,4])
    C0011923 (UMLS CUI [2])
    Disease activity - method of determining biological remission: Biochemistry
    Item
    If the patient is in biological remission, how was this determined? 2= Biochemistry (e.g. CRP, faecal calprotectin)
    boolean
    C0544452 (UMLS CUI [1,1])
    C0205460 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C2911685 (UMLS CUI [1,4])
    C0005477 (UMLS CUI [2])
    Disease activity - method of determining biological remission: Histologically
    Item
    If the patient is in biological remission, how was this determined? 3=Histologically (tissue analysis)
    boolean
    C0544452 (UMLS CUI [1,1])
    C0205460 (UMLS CUI [1,2])
    C0021390 (UMLS CUI [1,3])
    C2911685 (UMLS CUI [1,4])
    C0205462 (UMLS CUI [2])
    Item
    Has colorectal cancer been diagnosed?
    integer
    C0009402 (UMLS CUI [1])
    Outcome of the complication - hospitalization
    Code List
    Has colorectal cancer been diagnosed?
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Item
    If colorectal cancer has been diagnosed, had colorectal dysplasia previously been diagnosed?
    integer
    C0555952 (UMLS CUI [1,1])
    C0334044 (UMLS CUI [1,2])
    C0332152 (UMLS CUI [1,3])
    C0009402 (UMLS CUI [1,4])
    Outcome of the complication - hospitalization
    Code List
    If colorectal cancer has been diagnosed, had colorectal dysplasia previously been diagnosed?
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Item
    Patient died, regardless of cause
    integer
    C0011065 (UMLS CUI [1])
    Outcome of the complication - hospitalization
    Code List
    Patient died, regardless of cause
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Date of death
    Item
    Indicate the date of death
    date
    C1148348 (UMLS CUI [1])
    Item
    Indicate if death was attributable to IBD
    integer
    C0007465 (UMLS CUI [1,1])
    C0021390 (UMLS CUI [1,2])
    Outcome of the complication - hospitalization
    Code List
    Indicate if death was attributable to IBD
    CL Item
    No (0)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Unknown (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
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