ID

40552

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 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 (2)
  1. 9/11/18 9/11/18 - Sarah Riepenhausen
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

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License

Creative Commons BY-NC 4.0
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ICHOM Colorectal Cancer

English

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

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
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. 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.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Degree of health
Description

Degree of health

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

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

Data type

integer

Alias
UMLS CUI [1,1]
C0453855
UMLS CUI [1,2]
C2128962
2: Do certain liquids that you drink increase the number of bowel movements in a day?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0452428
UMLS CUI [1,2]
C2128962
3: Have you limited the types of solid foods you eat to control your bowel movements?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0439801
UMLS CUI [1,2]
C0453855
UMLS CUI [1,3]
C1290944
4: Have you limited the types of liquids you drink to control your bowel movements?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0439801
UMLS CUI [1,2]
C0452428
UMLS CUI [1,3]
C1290944
EORTC QLQ-C30
Description

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

Data type

float

Alias
UMLS CUI [1]
C4055104
EORTC QLQ-C29
Description

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

Data type

float

Alias
UMLS CUI [1]
C0451149
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?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0451149
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Similar models

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

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])
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)
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