ID

40585

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 Follow-up - patient reported form. The items cover 90 days post admission for index event. 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 (3)
  1. 5/14/19 5/14/19 -
  2. 5/21/19 5/21/19 -
  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 Conditions and Treatment Approaches Covered for Stroke

English

Follow-up - 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
Where are you living now?
Description

Inclusion Criteria: All patients Timing: 90 days post 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]
C0332282
UMLS CUI [1,4]
C0038454
Do you live alone now?
Description

Inclusion Criteria: All patients Timing: 90 days post 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]
C0332282
UMLS CUI [1,4]
C0038454
Survival and disease control
Description

Survival and disease control

Alias
UMLS CUI-1
C1148433
UMLS CUI-2
C0012634
UMLS CUI-3
C0243148
After your hospitalization for stroke, have you been told by a doctor that you have had a new stroke?
Description

Supporting Definition: New stroke within 90 days of 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]
C0038454
UMLS CUI [1,2]
C0332282
UMLS CUI [1,3]
C0184666
Since your hospitalization for stroke, have you smoked tobacco or cigarettes?
Description

Inclusion Criteria: If "1 = Yes" to SMOKE Timing: 90 days post admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0085134
UMLS CUI [1,2]
C0332282
UMLS CUI [1,3]
C3489408
Patient-reported health status
Description

Patient-reported health status

Alias
UMLS CUI-1
C0018759
UMLS CUI-2
C2987124
Are you able to walk?
Description

Supporting Definition: This item is also measured at baseline, as PRESTROKEAMB Inclusion Criteria: All patients Timing: Discharge + 7 days; 90 days post admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0598463
UMLS CUI [1,2]
C0080331
UMLS CUI [1,3]
C0332282
UMLS CUI [1,4]
C0038454
Do you need help from anybody to go to the toilet?
Description

Supporting Definition: This item is also measured at baseline, as PRESTROKETOILET Inclusion Criteria: All patients Timing: Discharge + 7 days; 90 days post admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0598463
UMLS CUI [1,2]
C0150810
UMLS CUI [1,3]
C0332282
UMLS CUI [1,4]
C0038454
Do you need help with dressing/undressing?
Description

Supporting Definition: This item is also measured at baseline, as PRESTROKEDRESS Inclusion Criteria: All patients Timing: Discharge + 7 days; 90 days post admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0598463
UMLS CUI [1,2]
C0085671
UMLS CUI [1,3]
C0332282
UMLS CUI [1,4]
C0038454
Do you need a tube for feeding?
Description

Supporting Definition: For example: a nasogastric tube or a gastrostomy tube Inclusion Criteria: All patients Timing: Discharge + 7 days; 90 days post admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0041281
Do you have problems with communication or understanding?
Description

Inclusion Criteria: All patients Timing: Discharge + 7 days; 90 days post admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0565998
UMLS CUI [1,2]
C0033213
Global01-10
Description

As there is an official distribution site for PROMIS questionnaires, the 10 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are PROMIS_Q01 up to PROMIS_Q10. The question can be answered with 1-5. For evaluation see: Revicki, D. A., Kawata, A., Harnam, N., Chen, W-H., Hays, R. D., & Cella, D. (2009). Predicting EUROQOL (EQ-5D) scores from the Patient Reported Outcomes Measurement Information System (PROMIS) global items and domain item banks in a United States sample. Quality of Life Research, 18(6), 783-91. (PMCID: PMC2704290) Inclusion Criteria: All patients Timing: Discharge + 7 days; 90 days post admission for index event Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C3836333
UMLS CUI [1,2]
C2964552
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Similar models

Follow-up - 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)
Item
Where are you living now?
integer
C2184149 (UMLS CUI [1,1])
C0450429 (UMLS CUI [1,2])
C0332282 (UMLS CUI [1,3])
C0038454 (UMLS CUI [1,4])
Living location post index event
Code List
Where are you living now?
CL Item
At home, with no community support (1)
C0442519 (UMLS CUI-1)
C1298908 (UMLS CUI-2)
C0009482 (UMLS CUI-3)
C0037438 (UMLS CUI-4)
(Comment:en)
CL Item
At home with community support (2)
C0442519 (UMLS CUI-1)
C0009482 (UMLS CUI-2)
C0037438 (UMLS CUI-3)
(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-3)
(Comment:en)
CL Item
In long term care (nursing home, chronic care hospital) (5)
C0023977 (UMLS CUI-1)
C0028688 (UMLS CUI-2)
C0259945 (UMLS CUI-3)
C0205191 (UMLS CUI-4)
(Comment:en)
CL Item
In an acute care hospital (6)
C3661916 (UMLS CUI-1)
(Comment:en)
CL Item
Other (888)
C0205394 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
Do you live alone now?
integer
C2184149 (UMLS CUI [1,1])
C0439044 (UMLS CUI [1,2])
C0332282 (UMLS CUI [1,3])
C0038454 (UMLS CUI [1,4])
Living alone pre-index event
Code List
Do you live alone now?
CL Item
Yes, I live alone (1)
C0439044 (UMLS CUI-1)
(Comment:en)
CL Item
No, I share 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 Group
Survival and disease control
C1148433 (UMLS CUI-1)
C0012634 (UMLS CUI-2)
C0243148 (UMLS CUI-3)
Item
After your hospitalization for stroke, have you been told by a doctor that you have had a new stroke?
integer
C0038454 (UMLS CUI [1,1])
C0332282 (UMLS CUI [1,2])
C0184666 (UMLS CUI [1,3])
Report of new stroke within 90 days after admission for stroke
Code List
After your hospitalization for stroke, have you been told by a doctor that you have had a new 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
Since your hospitalization for stroke, have you smoked tobacco or cigarettes?
integer
C0085134 (UMLS CUI [1,1])
C0332282 (UMLS CUI [1,2])
C3489408 (UMLS CUI [1,3])
Smoking cessation
Code List
Since your hospitalization for stroke, have you smoked tobacco or cigarettes?
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 Group
Patient-reported health status
C0018759 (UMLS CUI-1)
C2987124 (UMLS CUI-2)
Item
Are you able to walk?
integer
C0598463 (UMLS CUI [1,1])
C0080331 (UMLS CUI [1,2])
C0332282 (UMLS CUI [1,3])
C0038454 (UMLS CUI [1,4])
Poststroke functional status - Ambulation
Code List
Are you able to walk?
CL Item
Able to walk without help from another person with or without a device (1)
C2712089 (UMLS CUI-1)
C0332288 (UMLS CUI-2)
C1269765 (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
Do you need help from anybody to go to the toilet?
integer
C0598463 (UMLS CUI [1,1])
C0150810 (UMLS CUI [1,2])
C0332282 (UMLS CUI [1,3])
C0038454 (UMLS CUI [1,4])
Poststroke functional status - Toileting
Code List
Do you need help from anybody to go to the toilet?
CL Item
I can 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 need help to go to the toilet (2)
C0562816 (UMLS CUI-1)
C1521721 (UMLS CUI-2)
(Comment:en)
Item
Do you need help with dressing/undressing?
integer
C0598463 (UMLS CUI [1,1])
C0085671 (UMLS CUI [1,2])
C0332282 (UMLS CUI [1,3])
C0038454 (UMLS CUI [1,4])
Poststroke functional status - Dressing
Code List
Do you need help with dressing/undressing?
CL Item
I can manage dressing/undressing without help (1)
C0518459 (UMLS CUI-1)
C0332288 (UMLS CUI-2)
C1521721 (UMLS CUI-3)
(Comment:en)
CL Item
I need help dressing/undressing (2)
C0518459 (UMLS CUI-1)
C1521721 (UMLS CUI-2)
(Comment:en)
Item
Do you need a tube for feeding?
integer
C0041281 (UMLS CUI [1])
Feeding
Code List
Do you need a tube for feeding?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Do you have problems with communication or understanding?
integer
C0565998 (UMLS CUI [1,1])
C0033213 (UMLS CUI [1,2])
Ability to communicate
Code List
Do you have problems with communication or understanding?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Global01-10
Item
Global01-10
integer
C3836333 (UMLS CUI [1,1])
C2964552 (UMLS CUI [1,2])
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