ID

40533

Description

CHRONIC KIDNEY DISEASE DATA COLLECTION Version 1.0.0 Revised October 25th, 2017 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: Chronic Kidney Disease Stage G3a/A3 | Chronic Kidney Disease StageG 3b/A2/A3 | Chronic Kidney Disease Stage G4 | Chronic Kidney Disease Stage G5 (KDIGO 2012 Stages) Treatment Approaches: Pre-RRT = Pre-Renal Replacement Therapy | HD = Haemodialysis | PD = Peritoneal Dialysis | Tx = Renal Transplantation | CC = Conservative Care This ODM-file contains Outcome variables, clinical or administrative. To be collected 6-monthly, annually or ongoing. Surveys used: The OptumTM SF-36v2® Health Survey: The SF-36v2 Health Survey requires a license agreement prior to the use or reprodution of the tool. Information on how to obtain a license can be found here: bit.ly/SF36LIC . The scoring guide for the SF36v2 is only available upon a license agreement being made. Due to the requirement of a license the Score cannot be found in this version of the standard set. PROMIS-Global Health and PROMIS-29: Free for use in clinical practice and a license is not required. Information http://www.nihpromis.org/measures/translations . The scoring guides for the two PROMIS Scores can be found at bit.ly/PROMISGLOBALSCORE and bit.ly/PROMIS29SCORE . RAND-36: Free for use in clinical practice and a license is not required. The RAND-36 is available in English and Arabic. https://www.rand.org/health/surveys_tools/mos/36-item-short-form.html . The Scoring guide can be found at bit.ly/RAND36Score . Publication: Verberne WR, Das-Gupta Z, Allegretti AS, et al. Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group. American Journal of Kidney Diseases. Volume 73, Issue 3, 2019, Pages 372-384, ISSN 0272-6386, https://doi.org/10.1053/j.ajkd.2018.10.007 ICHOM was supported for the Chronic Kidney Disease Standard Set by NSW Agency for Clinical Innovation, Providence Health and Services, ERCPA, santeon and Dutch Kidney Foundation. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

www.ichom.org

Keywords

Versions (2)
  1. 7/27/18 7/27/18 - Sarah Riepenhausen
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

DOI

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License

Creative Commons BY-NC 4.0
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ICHOM Chronic Kidney Disease

English

Outcome (Clinical / administrative)

1 forms  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
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, 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.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
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
Survival
Description

Survival

Alias
UMLS CUI-1
C1148433
Indicate whether the patient died
Description

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Administrative or Clinical TYPE: Single answer

Data type

integer

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

INCLUSION CRITERIA: If "1 = yes" to DEATH TIMING: Ongoing REPORTING SOURCE: Administrative or Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C1148348
DD/MM/YYYY
Indicate the cause of death
Description

Use SMARRT categories INCLUSION CRITERIA: If "1 = yes" to DEATH TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0007465
Burden of Care
Description

Burden of Care

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C2828008
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?
Description

INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Administrative data TYPE: Numerical

Data type

integer

Alias
UMLS CUI [1,1]
C4086639
UMLS CUI [1,2]
C4086728
In total, how many days has the patient been hospitalised (requiring at least an overnight stay) at a hospital/acute care facility in the last 12 months?
Description

INCLUSION CRITERIA: If ≥1 to HOSPADMALL TIMING: Annually REPORTING SOURCE: Administrative data TYPE: Numerical

Data type

integer

Alias
UMLS CUI [1,1]
C3640790
UMLS CUI [1,2]
C4086728
Indicate if the patient was diagnosed with a cardiovascular event
Description

Cardiovascular events of interest are acute myocardial infarction, stroke (excluding transient ischemic attacks), and limb amputation (excluding traumatic injury) INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Administrative or Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C1320716
Indicate if the patient was diagnosed with an acute myocardial infarction
Description

INCLUSION CRITERIA: If "1 = yes" to CARDIOEV TIMING: Annually REPORTING SOURCE: Administrative or Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0155626
Indicate the date of acute myocardial infarction diagnosis
Description

Multiple dates possible INCLUSION CRITERIA: If "1 = yes" to CARDIOAMI TIMING: Annually REPORTING SOURCE: Administrative or Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0155626
UMLS CUI [1,2]
C2316983
DD/MM/YYYY
Indicate if the patient was diagnosed with a stroke
Description

INCLUSION CRITERIA: If "1 = yes" to CARDIOEV TIMING: Annually REPORTING SOURCE: Administrative or Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0038454
Indicate the date of stroke diagnosis
Description

Multiple dates possible INCLUSION CRITERIA: If "1 = yes" to CARDIOSTR TIMING: Annually REPORTING SOURCE: Administrative or Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0038454
UMLS CUI [1,2]
C0011008
DD/MM/YYYY
Indicate if the patient was diagnosed with a limb amputation
Description

INCLUSION CRITERIA: If "1 = yes" to CARDIOEV TIMING: Annually REPORTING SOURCE: Administrative or Clinical TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0002689
Indicate the date of limb amputation diagnosis (not due to traumatic injury)
Description

Multiple dates possible INCLUSION CRITERIA: If "1 = yes" to CARDIOLIMB TIMING: Annually REPORTING SOURCE: Administrative or Clinical TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C0002689
UMLS CUI [1,2]
C0011008
DD/MM/YYYY
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Similar models

Outcome (Clinical / administrative)

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (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])
Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Item Group
Survival
C1148433 (UMLS CUI-1)
Item
Indicate whether the patient died
integer
C0011065 (UMLS CUI [1])
Death
Code List
Indicate whether the patient died
CL Item
No  (0)
CL Item
Yes (1)
Date of death
Item
Indicate the date of death
date
C1148348 (UMLS CUI [1])
Item
Indicate the cause of death
integer
C0007465 (UMLS CUI [1])
Cause of death
Code List
Indicate the cause of death
CL Item
Cardiovascular (1)
CL Item
Infection (2)
CL Item
Renal Replacement Therapy Complication (3)
CL Item
Malignancy (4)
CL Item
Treatment Withdrawal (5)
CL Item
Other (6)
CL Item
Unknown (999)
Item Group
Burden of Care
C0087111 (UMLS CUI-1)
C2828008 (UMLS CUI-2)
All 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?
integer
C4086639 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Total number of days hospitalised
Item
In total, how many days has the patient been hospitalised (requiring at least an overnight stay) at a hospital/acute care facility in the last 12 months?
integer
C3640790 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Item
Indicate if the patient was diagnosed with a cardiovascular event
integer
C1320716 (UMLS CUI [1])
Cardiovascular events
Code List
Indicate if the patient was diagnosed with a cardiovascular event
CL Item
No  (0)
CL Item
Yes (1)
CL Item
Unknown (999)
Item
Indicate if the patient was diagnosed with an acute myocardial infarction
integer
C0155626 (UMLS CUI [1])
Acute Myocardial Infarction
Code List
Indicate if the patient was diagnosed with an acute myocardial infarction
CL Item
No  (0)
CL Item
Yes (1)
CL Item
Unknown (999)
Date of acute myocardial infarction
Item
Indicate the date of acute myocardial infarction diagnosis
date
C0155626 (UMLS CUI [1,1])
C2316983 (UMLS CUI [1,2])
Item
Indicate if the patient was diagnosed with a stroke
integer
C0038454 (UMLS CUI [1])
Stroke (excluding transient ischemic attacks)
Code List
Indicate if the patient was diagnosed with a stroke
CL Item
No  (0)
CL Item
Yes (1)
CL Item
Unknown (999)
Date of stroke
Item
Indicate the date of stroke diagnosis
date
C0038454 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item
Indicate if the patient was diagnosed with a limb amputation
integer
C0002689 (UMLS CUI [1])
Limb amputation (not due to traumatic injury)
Code List
Indicate if the patient was diagnosed with a limb amputation
CL Item
No  (0)
CL Item
Yes (1)
Date of limb amputation
Item
Indicate the date of limb amputation diagnosis (not due to traumatic injury)
date
C0002689 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
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