ID

40559

Description

ICHOM Lung cancer data collection Version 2.3.1 Revised: April 10th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: 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. For Lung Cancer, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Small Cell and Non-Small Cell Lung Cancer Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy | Immunotherapy | Other This document contains the Baseline - Patient-Reported Form. It depicts first doctor's visit. Collecting Patient-Reported Outcome Measures: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). European Organization for Research and Treatment of Cancer Quality of Life Lung Cancer-Specific Questionnaire (EORTC QLQ-LC13). Both are free for all health care organizations, but a license is needed for use. http:// groups.eortc.be/qol/eortc-qlq-c30 is the official distribution site for EORTC QLQ-C30 and EORTC QLQ-LC13 questionnaires. Therefore only the total score will be included in this version of the standard set. Publication: Mak KS, van Bommel AC, Stowell C, et al. Defining a standard set of patient-centred outcomes for lung cancer. Eur Respir J. 2016;48(3):852–860. doi:10.1183/13993003.02049-2015 For this standard set ICHOM was supported by the Alliance of Dedicated Cancer Centers. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Keywords

Versions (3)
  1. 5/14/19 5/14/19 -
  2. 5/16/19 5/16/19 -
  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 Lung Cancer

English

Baseline - Patient-Reported Form

1 forms  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Patient ID
Description

Supporting Definition: 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 Data Source: Administrative or clinical Type: Numerical Response Options: According to institution

Data type

integer

Alias
UMLS CUI [1]
C2348585
Demographic factors
Description

Demographic factors

Alias
UMLS CUI-1
C1704791
What is your date of birth?
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical or patient­‐reported Type: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C0421451
DD/MM/YYYY
Please indicate your sex at birth
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical or patient­‐reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is your ethnicity?
Description

In the original form response option is N/A. A codelist is not supplemented because it varies by country and should be determined by country (not for cross country comparison). Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Single answer

Data type

text

Alias
UMLS CUI [1]
C0015031
Please indicate highest level of schooling completed
Description

Supporting Definition: The level of schooling is defined in each country as per ISCED [International Standard Classification] Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0013658
Baseline Clinical factors
Description

Baseline Clinical factors

Alias
UMLS CUI-1
C0449440
UMLS CUI-2
C1442488
Have you unintentionally lost weight?
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Patient­‐reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C1262477
Do you have any of the following problems? 0 = I have no other diseases
Description

Supporting Definition: Based upon the Self-­administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self-­administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

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

Supporting Definition: Based upon the Self­‐administered Comorbidity Questionnaire (Sangha et al, 2003) Inclusion Criteria: All patients Timing: Baseline Data Source: Patient-­reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0003864
Please indicate your smoking status at time of your lung cancer diagnosis
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Patient­‐reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C1519386
Degree of health
Description

Degree of health

Alias
UMLS CUI-1
C0018759
EORTC QLQ-C30 Total Score
Description

As a license is needed for use of this questionnaire, the 30 actual questions are not included in this version of the standard set. ICHOM IDs are EORTCQLQC30_Q01 up to EORTCQLQC30_Q30. Inclusion Criteria: All patients Timing: Baseline 1 year post initiation of treatment Tracked ongoing annually for life (when hospital is able to track this ongoing) Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C4055104
UMLS CUI [1,2]
C2964552
EORTC QLQL-C13 Total score
Description

As a license is needed for use of this questionnaire, the 13 actual questions are not included in this version of the standard set. ICHOM IDs are EORTCQLQLC13_Q01 up to EORTCQLQLC30_Q13. EORTCQLQLC30_Q12 and EORTCQLQLC30_Q13 have each an additionally ID: EORTCQLQLC30_Q12SUB and EORTCQLQLC30_Q13SUB. Inclusion Criteria: All patients Inclusion Criteria: All patients Timing: Baseline 1 year post initiation of treatment Tracked ongoing annually for life (when hospital is able to track this ongoing) Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0451149
UMLS CUI [1,2]
C0242379
UMLS CUI [1,3]
C2964552
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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
Patient ID
integer
C2348585 (UMLS CUI [1])
Item Group
Demographic factors
C1704791 (UMLS CUI-1)
Date of birth
Item
What is your date of birth?
date
C0421451 (UMLS CUI [1])
Item
Please indicate your sex at birth
integer
C0079399 (UMLS CUI [1])
Sex
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)
C0079399 (UMLS CUI-1)
C0439673 (UMLS CUI-2)
(Comment:en)
Ethnicity
Item
What is your ethnicity?
text
C0015031 (UMLS CUI [1])
Item
Please indicate highest level of schooling completed
integer
C0013658 (UMLS CUI [1])
Educational Level
Code List
Please indicate highest level of schooling completed
CL Item
None (0)
C0557286 (UMLS CUI-1)
(Comment:en)
CL Item
Primary (1)
C0013658 (UMLS CUI-1)
C0033145 (UMLS CUI-2)
(Comment:en)
CL Item
Secondary (2)
C0557289 (UMLS CUI-1)
(Comment:en)
CL Item
Tertiary (3)
C0557291 (UMLS CUI-1)
(Comment:en)
Item Group
Baseline Clinical factors
C0449440 (UMLS CUI-1)
C1442488 (UMLS CUI-2)
Item
Have you unintentionally lost weight?
integer
C1262477 (UMLS CUI [1])
Weight loss
Code List
Have you unintentionally lost weight?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
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])
Item
Please indicate your smoking status at time of your lung cancer diagnosis
integer
C1519386 (UMLS CUI [1])
Smoking status
Code List
Please indicate your smoking status at time of your lung cancer diagnosis
CL Item
Never‐smoker (< 100 cigarettes in your lifetime) (1)
C0337672 (UMLS CUI-1)
(Comment:en)
CL Item
Ex-­smoker (stopped at least 1 year before diagnosis) (2)
C0337671 (UMLS CUI-1)
C1519384 (UMLS CUI-2)
C1277691 (UMLS CUI-3)
(Comment:en)
CL Item
Current smoker (3)
C3241966 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item Group
Degree of health
C0018759 (UMLS CUI-1)
EORTC QLQ-C30 Total Score
Item
EORTC QLQ-C30 Total Score
integer
C4055104 (UMLS CUI [1,1])
C2964552 (UMLS CUI [1,2])
EORTC QLQL-C13 Total score
Item
EORTC QLQL-C13 Total score
integer
C0451149 (UMLS CUI [1,1])
C0242379 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
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