ID

40555

Description

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 This ODM-file contains a Patient-reported Form to be administered at Baseline. 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.

Link

http://www.ichom.org/

Keywords

Versions (3)
  1. 12/7/17 12/7/17 -
  2. 9/11/18 9/11/18 - Sarah Riepenhausen
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

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Creative Commons BY-NC 4.0
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ICHOM Colorectal Cancer

English

Baseline Patient-reported Form

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
Patient's last name:
Description

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

Data type

text

Alias
UMLS CUI [1]
C1299487
Demographic Factors
Description

Demographic Factors

Alias
UMLS CUI-1
C1704791
Please indicate your sex at birth:
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is your date of birth?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C0421451
DD/MM/YYYY
Varies by country and should be determined by country (not for cross country comparison)
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0015031
Please indicate highest level of schooling completed. This response option is based upon the ISCED for the United States, and reflects standards in the U.S. Please adapt questions according to your country’s guidelines.
Description

This is based upon the International Standard Classification of Education for the United States, and reflects standards in the U.S. Please adapt questions according to your country’s guidelines. Primary refers to the first 8 years of formal education in elementary school in the US. Secondary school refers to the last four years of statutory formal education (grade 9-12) at high school in the US. Tertiary refers to colleges or universities, including undergraduate and postgraduate education in the US. INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0013658
What is your relationship status?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0439849
Baseline Clinical Factors
Description

Baseline Clinical Factors

Alias
UMLS CUI-1
C0449440
UMLS CUI-2
C1442488
Do you have any of the following problems? 0 = I have no other diseases
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0549184
Do you have any of the following problems? 1 = Heart disease (for example: angina, heart attack, or heart failure)
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0018799
Do you have any of the following problems? 2 = High blood pressure
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0020538
Do you have any of the following problems? 3 = Leg pain when walking due to poor circulation
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1306889
Do you have any of the following problems? 4 = Lung disease (For example, asthma, chronic bronchitis, or emphysema)
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0024115
Do you have any of the following problems? 5 = Diabetes
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0011849
Do you have any of the following problems? 6 = Kidney disease
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0022658
Do you have any of the following problems? 7 = Liver disease
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0023895
Do you have any of the following problems? 8 = Problems caused by stroke
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0038454
Do you have any of the following problems? 9 = Disease of the nervous system (For example, Parkinson’s disease or multiple sclerosis)
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0027765
Do you have any of the following problems? 10 = Other cancer (within the last 5 years)
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1707251
Do you have any of the following problems? 11 = Depression
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0011581
Do you have any of the following problems? 12 = Arthritis
Description

Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0003864
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Similar models

Baseline Patient-reported Form

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])
Patient's last name
Item
Patient's last name:
text
C1299487 (UMLS CUI [1])
Item Group
Demographic Factors
C1704791 (UMLS CUI-1)
Item
Please indicate your sex at birth:
integer
C0079399 (UMLS CUI [1])
Gender
Code List
Please indicate your sex at birth:
CL Item
Male (1)
C0086582 (UMLS CUI-1)
(Comment:en)
CL Item
Female (2)
C0086287 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Date of birth
Item
What is your date of birth?
date
C0421451 (UMLS CUI [1])
Ethnicity
Item
Varies by country and should be determined by country (not for cross country comparison)
integer
C0015031 (UMLS CUI [1])
Item
Please indicate highest level of schooling completed. This response option is based upon the ISCED for the United States, and reflects standards in the U.S. Please adapt questions according to your country’s guidelines.
integer
C0013658 (UMLS CUI [1])
Educational Level
Code List
Please indicate highest level of schooling completed. This response option is based upon the ISCED for the United States, and reflects standards in the U.S. Please adapt questions according to your country’s guidelines.
CL Item
None (0)
C0557286 (UMLS CUI-1)
(Comment:en)
CL Item
Primary (1)
C0557287 (UMLS CUI-1)
(Comment:en)
CL Item
Secondary (2)
C0557289 (UMLS CUI-1)
(Comment:en)
CL Item
Tertiary (3)
C0557291 (UMLS CUI-1)
(Comment:en)
Item
What is your relationship status?
integer
C0439849 (UMLS CUI [1])
Educational Level
Code List
What is your relationship status?
CL Item
Never married/partnered (0)
C0027952 (UMLS CUI-1)
(Comment:en)
CL Item
Married/partnered (1)
C0555047 (UMLS CUI-1)
C1546497 (UMLS CUI-2)
(Comment:en)
CL Item
Divorced/separated (2)
C0682073 (UMLS CUI-1)
(Comment:en)
CL Item
Widowed (3)
C0206275 (UMLS CUI-1)
(Comment:en)
Item Group
Baseline Clinical Factors
C0449440 (UMLS CUI-1)
C1442488 (UMLS CUI-2)
Comorbidities: None
Item
Do you have any of the following problems? 0 = I have no other diseases
boolean
C0009488 (UMLS CUI [1,1])
C0549184 (UMLS CUI [1,2])
Comorbidities: Heart disease
Item
Do you have any of the following problems? 1 = Heart disease (for example: angina, heart attack, or heart failure)
boolean
C0009488 (UMLS CUI [1,1])
C0018799 (UMLS CUI [1,2])
Comorbidities: High Blood Pressure
Item
Do you have any of the following problems? 2 = High blood pressure
boolean
C0009488 (UMLS CUI [1,1])
C0020538 (UMLS CUI [1,2])
Comorbidities: peripheral occlusive arterial disease
Item
Do you have any of the following problems? 3 = Leg pain when walking due to poor circulation
boolean
C0009488 (UMLS CUI [1,1])
C1306889 (UMLS CUI [1,2])
Comorbidities: Lung disease
Item
Do you have any of the following problems? 4 = Lung disease (For example, asthma, chronic bronchitis, or emphysema)
boolean
C0009488 (UMLS CUI [1,1])
C0024115 (UMLS CUI [1,2])
Comorbidities: Diabetes
Item
Do you have any of the following problems? 5 = Diabetes
boolean
C0009488 (UMLS CUI [1,1])
C0011849 (UMLS CUI [1,2])
Comorbidities: Kidney disease
Item
Do you have any of the following problems? 6 = Kidney disease
boolean
C0009488 (UMLS CUI [1,1])
C0022658 (UMLS CUI [1,2])
Comorbidities: Liver disease
Item
Do you have any of the following problems? 7 = Liver disease
boolean
C0009488 (UMLS CUI [1,1])
C0023895 (UMLS CUI [1,2])
Comorbidities: stroke
Item
Do you have any of the following problems? 8 = Problems caused by stroke
boolean
C0009488 (UMLS CUI [1,1])
C0038454 (UMLS CUI [1,2])
Comorbidities: Disease of the nervous system
Item
Do you have any of the following problems? 9 = Disease of the nervous system (For example, Parkinson’s disease or multiple sclerosis)
boolean
C0009488 (UMLS CUI [1,1])
C0027765 (UMLS CUI [1,2])
Comorbidities: Other Cancer
Item
Do you have any of the following problems? 10 = Other cancer (within the last 5 years)
boolean
C0009488 (UMLS CUI [1,1])
C1707251 (UMLS CUI [1,2])
Comorbidities: Depression
Item
Do you have any of the following problems? 11 = Depression
boolean
C0009488 (UMLS CUI [1,1])
C0011581 (UMLS CUI [1,2])
Comorbidities: Arthritis
Item
Do you have any of the following problems? 12 = Arthritis
boolean
C0009488 (UMLS CUI [1,1])
C0003864 (UMLS CUI [1,2])
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