0 Bedömningar
ID

40552

Beskrivning

COLORECTAL CANCER DATA COLLECTION Version 1.1.2 Revised: November 6th, 2017 http://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: All patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV) Excluded Conditions: Non-adenocarcinoma, non-primary colorectal tumors and patients with recurrent disease at baseline will be excluded. Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy In this standard set (parts of) the following questionnaires/scores are used: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30): Due to the need for a license, the EORTC QLQ-C30 questions are not included in this version of the standard set. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C29): Due to the need for a license, the EORTC QLQ-C29 questions are not included in this version of the standard set. Memorial Sloan-Kettering Cancer Center (MSKCC) Bowel Function Instrument: Only 4 of the items used. According to ICHOM it is free to use for all health care organizations and no license is needed. Temple, L., Bacik, J., Savatta, S. et al. The Development of a Validated Instrument to Evaluate Bowel Function After Sphincter-Preserving Surgery for Rectal Cancer. Dis Colon Rectum (2005) 48: 1353. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-LMC21): A license is needed for use of this questionnaire as well, however only one question is used. ICHOM was supported by Alliance of Dedicated Cancer Centers (CZ, DICA, Bowel Cancer Australia) for this standard set. Publication: Zerillo JA, Schouwenburg MG, van Bommel ACM, et al. An International Collaborative Standardizing a Comprehensive Patient-Centered Outcomes Measurement Set for Colorectal Cancer. JAMA Oncol. 2017;3(5):686–694. doi:10.1001/jamaoncol.2017.0417 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

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http://www.ichom.org/

Nyckelord

Versioner (2)
  1. 2018-09-11 2018-09-11 - Sarah Riepenhausen
  2. 2020-04-30 2020-04-30 - Sarah Riepenhausen
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ICHOM

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30 april 2020

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Creative Commons BY-NC 4.0
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    ICHOM Colorectal Cancer

    Engelsk

    Patient-reported Form (Baseline, 6 months and annually post-treatment)

    1 Formulär  
    Administrative Data
    Beskrivning

    Administrative Data

    Alias
    UMLS CUI-1
    C1320722 (Administrative documentation)
    SNOMED
    405624007
    Indicate the patient's medical record number
    Beskrivning

    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

    Datatyp

    integer

    Alias
    UMLS CUI [1]
    C1269815 (Patient identification)
    SNOMED
    372039005
    Patient's last name:
    Beskrivning

    The patients' name will not be shared with ICHOM.  INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical

    Datatyp

    text

    Alias
    UMLS CUI [1]
    C1299487 (Patient name)
    SNOMED
    371484003
    Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
    Beskrivning

    This Item does not exist in the original standard set. In other standard sets with multiple timepoints the following is requested to do: 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.

    Datatyp

    text

    Alias
    UMLS CUI [1,1]
    C0439564 (Relative time)
    SNOMED
    118578006
    LOINC
    LP21276-8
    UMLS CUI [1,2]
    C1442488 (Baseline)
    LOINC
    LA16758-7
    Degree of health
    Beskrivning

    Degree of health

    Over the last 4 weeks 1: Do certain solid foods increase the number of bowel movements in a day?
    Beskrivning

    INCLUSION CRITERIA: Patients with surgery/radiotherapy TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

    Datatyp

    integer

    Alias
    UMLS CUI [1,1]
    C0453855 (Solid food)
    SNOMED
    228060008
    UMLS CUI [1,2]
    C2128962 (reported number of bowel movements per day)
    2: Do certain liquids that you drink increase the number of bowel movements in a day?
    Beskrivning

    INCLUSION CRITERIA: Patients with surgery/radiotherapy TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

    Datatyp

    integer

    Alias
    UMLS CUI [1,1]
    C0452428 (Drink (dietary substance))
    SNOMED
    230118003
    UMLS CUI [1,2]
    C2128962 (reported number of bowel movements per day)
    3: Have you limited the types of solid foods you eat to control your bowel movements?
    Beskrivning

    INCLUSION CRITERIA: Patients with surgery/radiotherapy TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

    Datatyp

    integer

    Alias
    UMLS CUI [1,1]
    C0439801 (Limited (extensiveness))
    SNOMED
    255469002
    LOINC
    LP34047-8
    UMLS CUI [1,2]
    C0453855 (Solid food)
    SNOMED
    228060008
    UMLS CUI [1,3]
    C1290944 (Bowel control, function)
    SNOMED
    16490003
    4: Have you limited the types of liquids you drink to control your bowel movements?
    Beskrivning

    INCLUSION CRITERIA: Patients with surgery/radiotherapy TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

    Datatyp

    integer

    Alias
    UMLS CUI [1,1]
    C0439801 (Limited (extensiveness))
    SNOMED
    255469002
    LOINC
    LP34047-8
    UMLS CUI [1,2]
    C0452428 (Drink (dietary substance))
    SNOMED
    230118003
    UMLS CUI [1,3]
    C1290944 (Bowel control, function)
    SNOMED
    16490003
    EORTC QLQ-C30
    Beskrivning

    Due to need for a license the questions are not included in this version of the standard set. In the original standard set they have IDs from EORTCQLQ30_Q01 to EORTCQLQC30_Q30. INCLUSION CRITERIA: All patients TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported Type: originally: Single answer for the separate questions

    Datatyp

    float

    Alias
    UMLS CUI [1]
    C4055104 (EORTC QLQ-C30 Health and Quality of Life Rating Scale)
    EORTC QLQ-C29
    Beskrivning

    Due to need for a license the questions are not included in this version of the standard set. In the original standard set they have IDs from EORTCQLQ29_Q31 to EORTCQLQC29_Q59. INCLUSION CRITERIA: Patients with surgery/radiotherapy TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported Type: originally: Single answer for the separate questions

    Datatyp

    float

    Alias
    UMLS CUI [1]
    C0451149 (EORTC - Quality of life questionnaire)
    SNOMED
    273446001
    Please indicate the extent to which you have experienced the following symptom during the past week. During the past week: Have you had tingling hands or feet?
    Beskrivning

    INCLUSION CRITERIA: Patients with systemic therapy TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

    Datatyp

    integer

    Alias
    UMLS CUI [1]
    C0451149 (EORTC - Quality of life questionnaire)
    SNOMED
    273446001
    Tillbaka till toppen

    Similar models

    Patient-reported Form (Baseline, 6 months and annually post-treatment)

    1 Formulär
    Name
    Typ
    Description | Question | Decode (Coded Value)
    Datatyp
    Alias
    Item Group
    Administrative Data
    C1320722 (UMLS CUI-1)
    Patient ID
    Item
    Indicate the patient's medical record number
    integer
    C1269815 (UMLS CUI [1])
    Patient's last name
    Item
    Patient's last name:
    text
    C1299487 (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
    Degree of health
    Item
    Over the last 4 weeks 1: Do certain solid foods increase the number of bowel movements in a day?
    integer
    C0453855 (UMLS CUI [1,1])
    C2128962 (UMLS CUI [1,2])
    Question 1 of MSKCC_Q01
    Code List
    Over the last 4 weeks 1: Do certain solid foods increase the number of bowel movements in a day?
    CL Item
    Most of the time  (1)
    C3828954 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Rarely  (3)
    C3843074 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Never  (4)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always  (0)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    2: Do certain liquids that you drink increase the number of bowel movements in a day?
    integer
    C0452428 (UMLS CUI [1,1])
    C2128962 (UMLS CUI [1,2])
    Question 1 of MSKCC_Q01
    Code List
    2: Do certain liquids that you drink increase the number of bowel movements in a day?
    CL Item
    Most of the time  (1)
    C3828954 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Rarely  (3)
    C3843074 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Never  (4)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always  (0)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    3: Have you limited the types of solid foods you eat to control your bowel movements?
    integer
    C0439801 (UMLS CUI [1,1])
    C0453855 (UMLS CUI [1,2])
    C1290944 (UMLS CUI [1,3])
    Question 1 of MSKCC_Q01
    Code List
    3: Have you limited the types of solid foods you eat to control your bowel movements?
    CL Item
    Most of the time  (1)
    C3828954 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Rarely  (3)
    C3843074 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Never  (4)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always  (0)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    4: Have you limited the types of liquids you drink to control your bowel movements?
    integer
    C0439801 (UMLS CUI [1,1])
    C0452428 (UMLS CUI [1,2])
    C1290944 (UMLS CUI [1,3])
    Question 1 of MSKCC_Q01
    Code List
    4: Have you limited the types of liquids you drink to control your bowel movements?
    CL Item
    Most of the time  (1)
    C3828954 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Rarely  (3)
    C3843074 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Never  (4)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always  (0)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    EORTC QLQ-C30
    Item
    EORTC QLQ-C30
    float
    C4055104 (UMLS CUI [1])
    EORTC QLQ-C29
    Item
    EORTC QLQ-C29
    float
    C0451149 (UMLS CUI [1])
    Item
    Please indicate the extent to which you have experienced the following symptom during the past week. During the past week: Have you had tingling hands or feet?
    integer
    C0451149 (UMLS CUI [1])
    Question 1 of MSKCC_Q01
    Code List
    Please indicate the extent to which you have experienced the following symptom during the past week. During the past week: Have you had tingling hands or feet?
    CL Item
    Not at all (1)
    C2984077 (UMLS CUI-1)
    (Comment:en)
    CL Item
    A little (2)
    C2984078 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite a bit (3)
    C2984080 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Very much (4)
    C2984081 (UMLS CUI-1)
    (Comment:en)
    Tillbaka till toppen 

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