ID

40584

Description

ICHOM Stroke data collection Version 2.0.1 Revised: June 21th, 2018 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 stroke, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Patients who have been hospitalized for an index ischemic stroke (IS) or intracereberal hemorrhage (ICH). Patients with subarachnoid hemorrhage (SAH) are excluded. Inclusion of transient ischemic attack (TIA) or patients with IS or ICH who are evaluated but not hospitalized is not required. Treatment Approaches: IV Thrombolysis | Thrombectomy | Hemicraniectomy This form contains index event patient-reported form. The items cover the entrance into outcome tracking system for Stroke. If a second stroke occurs between discharge and the “90 day post index” collection, you should reset the measurement scale, treating them as a new patient. Questionnaires used in this standard set: PROMIS-10. It is free for all health care organizations, and a license is not needed. There are translations available for Spanish, French, German,and Dutch. As http://www.nihpromis.org is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Simplified Modified Rankin Scale Questionnaire (smRSq) – Clinician. There is no patent on thes smRSq or fee for using it in clinical practice; however Lippincott Williams & Wilkins (LWW) own the rights to the published article where the smRSq is introduced. Therefore here only the total score is included. The smRSq flow chart can be found at http://stroke.ahajournals.org/content/42/8/2276 “Simplified Modified Rankin Scale Questionnaire Reproducibility Over the Telephone and Validation With Quality of Life” Stroke 2011; 42: 2276-2279 © 2011 American Heart Association, Inc. Wolters Kluwer Health. Publication: Salinas J, Sprinkhuizen SM, Ackerson T, et al. An International Standard Set of Patient-Centered Outcome Measures After Stroke. Stroke. 2015;47(1):180–186. doi:10.1161/STROKEAHA.115.010898 For the Stroke Standard Set ICHOM was supported by the American Heart Association and the American Stroke Association. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Keywords

Versions (4)
  1. 5/2/19 5/2/19 -
  2. 5/8/19 5/8/19 -
  3. 5/21/19 5/21/19 -
  4. 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 Conditions and Treatment Approaches Covered for Stroke

English

Index event - Patient-reported

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]
C1269815
Demographic factors
Description

Demographic factors

Alias
UMLS CUI-1
C1704791
Date of birth
Description

Inclusion Criteria: All patients Timing: Admission for index event Data Source: Clinical, patient-reported, or administrative data Type: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C0001779
UMLS CUI [2]
C0421451
DD/MM/YYYY
Please indicate the patient's sex at birth
Description

Inclusion Criteria: All patients Timing: Admission for index event Data Source: Clinical, patient-reported, or administrative data 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: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

text

Alias
UMLS CUI [1]
C0015031
Where were you living prior to your stroke or transient ischaemic attack (TIA)?
Description

Supporting Definition: Most recent place of residence pre stroke Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C2184149
UMLS CUI [1,2]
C0450429
UMLS CUI [1,3]
C0332152
UMLS CUI [1,4]
C0038454
Did you live alone prior to your stroke or transient ischaemic attack (TIA)?
Description

Inclusion Criteria: If you ticked "At home, with no community support" in the items LIVINGLOCPRE Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C2184149
UMLS CUI [1,2]
C0439044
UMLS CUI [1,3]
C0332152
UMLS CUI [1,4]
C0038454
Were you able to walk prior to your stroke or transient ischaemic attack (TIA)?
Description

Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0598463
UMLS CUI [1,2]
C0332152
UMLS CUI [1,3]
C0038454
UMLS CUI [2]
C0080331
Did you need help from anybody to go to the toilet prior to your stroke or transient ischaemic attack (TIA)?
Description

Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0598463
UMLS CUI [1,2]
C0332152
UMLS CUI [1,3]
C0038454
UMLS CUI [2]
C0150810
Did you need help with dressing/undressing prior to your stroke or transient ischaemic attack (TIA)?
Description

Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0598463
UMLS CUI [1,2]
C0332152
UMLS CUI [1,3]
C0038454
UMLS CUI [2]
C0518459
Vascular and systemic
Description

Vascular and systemic

Alias
UMLS CUI-1
C1801960
UMLS CUI-2
C0012634
UMLS CUI-3
C0442893
UMLS CUI-4
C0262926
Prior to this hospitalization, have you ever been told by a doctor that you have had a stroke?
Description

Supporting Definition: Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0559159
UMLS CUI [1,2]
C0262926
Have you ever been told by a doctor that you have had a transient ischemic attack (this is sometimes called a TIA or mini-stroke)?
Description

Supporting Definition: Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0007787
UMLS CUI [1,2]
C0332152
UMLS CUI [1,3]
C0262926
Have you ever been told by your doctor that you've had a heart attack (this is sometimes called a myocardial infarction, or MI)?
Description

Supporting Definition: Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1275835
UMLS CUI [1,2]
C0262926
Have you ever been told by your doctor that you have coronary artery disease?
Description

Supporting Definition: Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1956346
UMLS CUI [1,2]
C0262926
Have you ever been told by your doctor that you have atrial fibrillation?
Description

Supporting Definition: Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0004238
UMLS CUI [1,2]
C0262926
Have you ever been told by your doctor that you have diabetes?
Description

Supporting Definition: Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0011849
UMLS CUI [1,2]
C0262926
Have you ever been told by a doctor that you have high blood pressure (this is sometimes called hypertension)?
Description

Supporting Definition: Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0020538
UMLS CUI [1,2]
C0262926
Have you ever been told by your doctor that you have high cholesterol (this is sometimes called hyperlipidemia or dyslipidemia)?
Description

Supporting Definition: Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0020473
UMLS CUI [1,2]
C0262926
Do you currently smoke, or have you smoked cigarettes or tobacco over the past year?
Description

Supporting Definition: Smoking status (of cigarettes or tobacco). Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1519386
UMLS CUI [1,2]
C0262926
Do you drink more than one alcoholic drink a day?
Description

Supporting Definition: One standard alcoholic drink is: 12 ounces of regular beer (about 5% alcohol) 5 ounces of wine (about 12% alcohol) 1.5 ounces of distilled spirits (about 40% alcohol) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0001948
UMLS CUI [1,2]
C0262926
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Similar models

Index event - Patient-reported

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
C1269815 (UMLS CUI [1])
Item Group
Demographic factors
C1704791 (UMLS CUI-1)
Age
Item
Date of birth
date
C0001779 (UMLS CUI [1])
C0421451 (UMLS CUI [2])
Item
Please indicate the patient's sex at birth
integer
C0079399 (UMLS CUI [1])
Sex
Code List
Please indicate the patient's sex at birth
CL Item
Male (0)
C1706180 (UMLS CUI-1)
(Comment:en)
CL Item
Female (1)
C0086287 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Ethnicity
Item
What is your ethnicity?
text
C0015031 (UMLS CUI [1])
Item
Where were you living prior to your stroke or transient ischaemic attack (TIA)?
integer
C2184149 (UMLS CUI [1,1])
C0450429 (UMLS CUI [1,2])
C0332152 (UMLS CUI [1,3])
C0038454 (UMLS CUI [1,4])
Living location pre index event
Code List
Where were you living prior to your stroke or transient ischaemic attack (TIA)?
CL Item
At home, with no community support (1)
C0442519 (UMLS CUI-1)
C1298908 (UMLS CUI-3)
C0009482 (UMLS CUI-4)
C0037438 (UMLS CUI-5)
(Comment:en)
CL Item
At home with community support (2)
C0442519 (UMLS CUI-1)
C0009482 (UMLS CUI-3)
C0037438 (UMLS CUI-4)
(Comment:en)
CL Item
In an assisting living home in the community (senior's home) (3)
C0028688 (UMLS CUI-1)
(Comment:en)
CL Item
In a rehabilitation hospital or skilled care facilities (SNIF, IRF, LTACH) (4)
C0184666 (UMLS CUI-1)
C0034991 (UMLS CUI-2)
C0018704 (UMLS CUI-4)
(Comment:en)
CL Item
In long term care (nursing home, chronic care hospital) (5)
C0023977 (UMLS CUI-1)
C0028688 (UMLS CUI-3)
C0259945 (UMLS CUI-5)
C0205191 (UMLS CUI-6)
(Comment:en)
CL Item
Other (888)
C0205394 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
Did you live alone prior to your stroke or transient ischaemic attack (TIA)?
integer
C2184149 (UMLS CUI [1,1])
C0439044 (UMLS CUI [1,2])
C0332152 (UMLS CUI [1,3])
C0038454 (UMLS CUI [1,4])
Living alone pre-index event
Code List
Did you live alone prior to your stroke or transient ischaemic attack (TIA)?
CL Item
Yes, I lived alone (1)
C0439044 (UMLS CUI-1)
(Comment:en)
CL Item
No, I shared my household with spouse/partner or other person (e.g. sibling, children, parents) (2)
C1443355 (UMLS CUI-1)
C2184147 (UMLS CUI-2)
C2184149 (UMLS CUI-3)
C0205394 (UMLS CUI-4)
C0027361 (UMLS CUI-5)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
Were you able to walk prior to your stroke or transient ischaemic attack (TIA)?
integer
C0598463 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
C0038454 (UMLS CUI [1,3])
C0080331 (UMLS CUI [2])
Prestroke functional status - Ambulation
Code List
Were you able to walk prior to your stroke or transient ischaemic attack (TIA)?
CL Item
Able to walk without help from another person with or without a device (1)
C2712089 (UMLS CUI-1)
C1269765 (UMLS CUI-2)
C0332288 (UMLS CUI-3)
(Comment:en)
CL Item
Able to walk with help from another person (2)
C2712089 (UMLS CUI-1)
C1269765 (UMLS CUI-2)
(Comment:en)
CL Item
Unable to walk (3)
C0560046 (UMLS CUI-1)
(Comment:en)
Item
Did you need help from anybody to go to the toilet prior to your stroke or transient ischaemic attack (TIA)?
integer
C0598463 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
C0038454 (UMLS CUI [1,3])
C0150810 (UMLS CUI [2])
Prestroke functional status - Toileting
Code List
Did you need help from anybody to go to the toilet prior to your stroke or transient ischaemic attack (TIA)?
CL Item
I could manage going to the toilet without assistance (1)
C0562816 (UMLS CUI-1)
C0332288 (UMLS CUI-2)
C1521721 (UMLS CUI-3)
(Comment:en)
CL Item
I needed help to go to the toilet (2)
C0562816 (UMLS CUI-1)
C1521721 (UMLS CUI-2)
(Comment:en)
Item
Did you need help with dressing/undressing prior to your stroke or transient ischaemic attack (TIA)?
integer
C0598463 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
C0038454 (UMLS CUI [1,3])
C0518459 (UMLS CUI [2])
Prestroke functional status - Toileting
Code List
Did you need help with dressing/undressing prior to your stroke or transient ischaemic attack (TIA)?
CL Item
I could manage dressing/undressing without help (1)
C0518459 (UMLS CUI-1)
(Comment:en)
CL Item
I needed help dressing/undressing (2)
C1521721 (UMLS CUI-1)
C0518459 (UMLS CUI-2)
(Comment:en)
Item Group
Vascular and systemic
C1801960 (UMLS CUI-1)
C0012634 (UMLS CUI-2)
C0442893 (UMLS CUI-3)
C0262926 (UMLS CUI-4)
Item
Prior to this hospitalization, have you ever been told by a doctor that you have had a stroke?
integer
C0559159 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Prior Stroke
Code List
Prior to this hospitalization, have you ever been told by a doctor that you have had a stroke?
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)
Item
Have you ever been told by a doctor that you have had a transient ischemic attack (this is sometimes called a TIA or mini-stroke)?
integer
C0007787 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
C0262926 (UMLS CUI [1,3])
Prior TIA
Code List
Have you ever been told by a doctor that you have had a transient ischemic attack (this is sometimes called a TIA or mini-stroke)?
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)
Item
Have you ever been told by your doctor that you've had a heart attack (this is sometimes called a myocardial infarction, or MI)?
integer
C1275835 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Prior MI
Code List
Have you ever been told by your doctor that you've had a heart attack (this is sometimes called a myocardial infarction, or MI)?
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)
Item
Have you ever been told by your doctor that you have coronary artery disease?
integer
C1956346 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Coronary artery disease
Code List
Have you ever been told by your doctor that you have coronary artery disease?
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)
Item
Have you ever been told by your doctor that you have atrial fibrillation?
integer
C0004238 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Atrial fibrillation
Code List
Have you ever been told by your doctor that you have atrial fibrillation?
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)
Item
Have you ever been told by your doctor that you have diabetes?
integer
C0011849 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Diabetes mellitus
Code List
Have you ever been told by your doctor that you have diabetes?
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)
Item
Have you ever been told by a doctor that you have high blood pressure (this is sometimes called hypertension)?
integer
C0020538 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Hypertension
Code List
Have you ever been told by a doctor that you have high blood pressure (this is sometimes called hypertension)?
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)
Item
Have you ever been told by your doctor that you have high cholesterol (this is sometimes called hyperlipidemia or dyslipidemia)?
integer
C0020473 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Hyperlipidemia
Code List
Have you ever been told by your doctor that you have high cholesterol (this is sometimes called hyperlipidemia or dyslipidemia)?
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)
Item
Do you currently smoke, or have you smoked cigarettes or tobacco over the past year?
integer
C1519386 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Smoking status
Code List
Do you currently smoke, or have you smoked cigarettes or tobacco over the past year?
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)
Item
Do you drink more than one alcoholic drink a day?
integer
C0001948 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
Alcohol use
Code List
Do you drink more than one alcoholic drink a day?
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)
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