STROKE

DATA COLLECTION
REFERENCE GUIDE
Version 2.0.1
Revised: June 21st, 2018

Measuring
results
that matter

Ability to
communicate

Stroke
 STROKE

We are thrilled that you are interested in measuring outcomes for your stroke patients according to ICHOM
standards. It is our hope that this Reference Guide will facilitate the process of implementing our Standard Set
and ensure collection of comparable data for global benchmarking and learning.

© 2018 ICHOM. All rights reserved. When using this set of outcomes, or quoting therefrom, in any way, we solely require that you always
make a reference to ICHOM as the source so that this organization can continue its work to define more standard outcome sets.

DATA COLLECTION REFERENCE GUIDE STROKE | 1

Introducing ICHOM and the Reference Guide
ICHOM brings together patient representatives, clinician leaders, and registry leaders from all over the world
to develop Standard Sets, comprehensive yet parsimonious sets of outcomes and case-mix variables we
recommend all providers track.

Each Standard Set focuses on patient-centered results, and provides an internationally-agreed upon method for
measuring each of these outcomes. We do this because we believe that standardized outcomes measurement
will open up new possibilities to compare performance globally, allow clinicians to learn from each other, and
rapidly improve the care we provide our patients.

Our Standard Sets include initial conditions and risk factors to enable meaningful case-mix adjustment
globally, ensuring that comparisons of outcomes will take into account the differences in patient populations
across not just providers, but also countries and regions. We also include high-level treatment variables to
allow stratification of outcomes by major treatment types. A comprehensive data dictionary is included in the
appendix.

Our aim is to make Standard Sets freely accessible to healthcare institutions worldwide to begin measuring,
and ultimately benchmark the outcomes they achieve. In order to have a guide from which we can benchmark
outcomes, we require feedback from initial implementation efforts. As such, this Reference Guide may undergo
revisions on a regular basis. If you have any suggestions or would like to provide feedback, please contact
implement@ichom.org

Working Group Members for Stroke

The following individuals dedicated both time and expertise to develop the ICHOM Standard Set for Stroke in
partnership with ICHOM, under the leadership of Dr. Lee Schwamm, Professor of Neurology at Harvard Medical
School and Vice Chairman of Neurology at Massachusetts General Hospital in Boston.
Australia Canada Netherlands United States
Julie Bernhardt Patrice Lindsay Gerard Ribbers Teri Ackerson
Frank Silver Mary George
Brazil Sweden
Eric Smith Adam Kelly
Sheila Martins Bo Norrving
Louise Morgan
China United Kingdom Joel Salinas
Liping Liu Charlie Davie Lee Schwamm
Stephanie Gething Linda Williams

DATA COLLECTION REFERENCE GUIDE STROKE | 2

Supporting Organizations
The Stroke Standard Set is made possible only through the support of the American Heart Association and
American Stroke Association.

Thank you.

Conditions and Treatment Approaches Covered for Stroke

For stroke, the following conditions and treatment approaches (or interventions) are covered by our Standard
Set.

Patients who have been hospitalized for an index ischemic stroke (IS) or intracereberal
hemorrhage (ICH). Patients with subarachnoid hemorrhage (SAH) are excluded.
Conditions
Inclusion of transient ischemic attack (TIA) or patients with IS or ICH who are evaluated
but not hospitalized is not required.
Treatment
IV Thrombolysis | Thrombectomy | Hemicraniectomy
Approaches

A Note on Patient-Reported Questions in the Stroke Standard Set

ICHOM’s work focuses on health outcomes and the measurement of what matters most to patients. A large
component of all our Standard Sets, therefore, is the collection of patient-reported outcomes.

All patient-reported forms in the Stroke Standard Set are designed to be completed by the patient. However,
for some stroke patients, answering questions and/or completing questionnaires can be challenging. If a patient
is unable to respond to parts or all of a survey, answers should be provided by a proxy, his or her clinician, or
abstracted from medical records.

DATA COLLECTION REFERENCE GUIDE STROKE | 3

ICHOM Standard Set for Stroke
Case-Mix Variables
Patient Population Measure Supporting Information Timing Data Source
Demographic Factors
Age Date of birth Administrative
Sex Sex at birth Admission for data
Note that regulations on index stroke
Ethnicity reporting ethnicity may differ event
per country
Most recent place of Admission for
All patients
Living location residence pre stroke and 90 index stroke
Patient-reported
days post admission event;
90 days + 7
Living situation pre stroke and days post
Living alone
90 days post admission admission for
index event

Stroke Type and Severity

Stroke type Response options: IS; ICH; TIA
Admission for
Measured by NIHSS & Level Clinical
All patients Stroke severity index stroke
of consciousness
event
Duration of symptoms N/A Patient-reported

Vascular and Systemic

Prior Stroke
Prior TIA
Prior MI
Coronary artery
disease Clinical
Atrial fibrillation
Admission for
Diabetes mellitus
All patients N/A index stroke
Hypertension
event
Hyperlipidemia
Smoking status
(current or in past
year) Patient-reported
Alcohol use (>1 drink a
day)

Treatment/Care Related
Date of index admission and
Discharge + 7 Administrative
Length of stay date of discharge from acute
days data
care hospital
Admission for
Diagnostic evidence
N/A index stroke Clinical
All patients base
event
Dedicated stroke
Rehabilitation rehabilitation during acute or Discharge + 7 Administrative
post-acute care days data
Discharge destination N/A

DATA COLLECTION REFERENCE GUIDE STROKE | 4

Treatment Variables
Patient Population Measure Supporting Information Timing Data Source
Treatment Variables
Ischemic stroke
Thrombolytic therapy
patients
Ischemic stroke
Thrombectomy Discharge + 7
patients N/A Clinical
days
Intracereberal
hemorrhage Hemicraniectomy
patients

Outcomes
Patient Population Measure Supporting Information Timing Data Source
Acute Complications of Treatment
Patients who Symptomatic
received intracranial
Discharge + 7
thrombolytic hemorrhage after N/A Clinical
days
therapy or thrombolysis or
thrombectomy thrombectomy

Survival and Disease Control

Discharge + 7
days;
90 days + 7
Administrative
Overall survival All-cause mortality days post
data
admission for
index event;
All patients
Annually
Discharge + 7
days;
Ability to return to
Tracked via smRSq 90 days +/- 7 Clinical
usual activities
days post-
discharge

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Patient-Reported Outcomes
Patient Population Measure Supporting Information Timing Data Source
Patient-Reported Health Status
Overall mental
wellbeing (including
cognitive and Tracked via PROMIS Global
psychiatric Health 90 days + 7
functioning, social days post
functioning) admission for
Overall physical index event
wellbeing (including Tracked via PROMIS Global
pain, fatigue, and Health
general health status)
Admission for
index stroke
event:
Discharge + 7
Mobility Tracked via single item
days;
90 days +/- 7
days post-
All patients discharge Patient-reported
Feeding Tracked via single item Discharge + 7
days;
Ability to 90 days +/- 7
Tracked via single item
communicate days post-
discharge
Admission for
index stroke
event:
Self care (including
Tracked via RIKS stroke Discharge + 7
grooming, toileting &
functional items days;
dressing)
90 days +/- 7
days post-
discharge
Self-reported new 90 days + 7
Tracked via single item
stroke days post
Adherence to smoking admission for
Smoking cessation
cessation advise index event

DATA COLLECTION REFERENCE GUIDE STROKE | 6

Follow-Up Timeline
The following timeline illustrates when Standard Set variables should be collected from patients, clinicians, and
administrative sources. Links to the sample questionnaires may be found in the legend below.

Entrance into Discharge +7 90 days post Annually post

outcome tracking days index index event
system for Stroke

The following questionnaires should be

If a second stroke occurs between discharge and the “90 day administered at the indicated time points
post index” collection, you should reset the measurement Survival
scale, treating them as a new patient.
Clinical Form

Patient-Reported Form

Administrative Form

Collecting Patient- and Clinician-Reported Outcome Measures

Survey(s) Used Licensing Information Scoring Guide
The PROMIS-10 is free for all health care The scoring guide may
Patient Reported Outcomes
organizations, and a license is not needed. There are be found on page 9, as
Measurement Information
translations available for Spanish, French, German, well as at https://www.
System Short Form
and Dutch. Translations will soon be available for assessmentcenter.net/
version 1.1 Global Health
Portugese and Mandarin. More information may documents/Scoring%20
(PROMIS-10) - Patient/
be found at http://www.nihpromis.org/measures/ PROMIS%20Global%20
Proxy
translations short%20form.pdf
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. There is a cost of USD700 to
use the flow chart diagram from within this article but
permission is not needed for the assessment of the
To facilitate the use of the
Simplified Modified Rankin questions in patients. The smRSq is also a sub-section
smRSq, instructions are
Scale Questionnaire of the regular smRSq, which is also without license
provided in the Appendix
(smRSq) - Clinician fee. The smRSq flow chart can be found at http://
on page 11.
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

The Growing ICHOM Community

By implementing the ICHOM Standard Sets, you become part of an expanding, international community of
innovative health care providers dedicated to improving value for patients. To learn more about how ICHOM can
assist your organization in implementing outcome measurement, contact us at implement@ichom.org, or visit
http://www.ichom.org/measure.
DATA COLLECTION REFERENCE GUIDE STROKE | 7
 Appendix

DATA COLLECTION REFERENCE GUIDE STROKE | 8

Scoring Guide for the PROMIS Short Form version 1.1 Global
Health (PROMIS-10)
Scoring: The PROMIS Global Health short form is a 10-item instrument representing multiple domains. It can be
scored into a Global Physical Health component and Global Mental Health component using the tables below.
Because a scoring table is prepared for a fixed set of items, it can only be used when an examinee responds to all
of the items in the set. One or more missing responses will render such scoring tables unusable.

The Global scores require re-coding of three items so that high scores reflect better functioning.

5=0 No pain

4=1
4=2
4=3

3=4
How would you rate your 3=5
Global07 In the past 7 days
pain on average 3=6

2=7
2=8
2=9

1=10 Worst pain

imaginable
5=None
4=Mild
How would you rate your
Global08 In the past 7 days 3=Moderate
fatigue on average?
2=Severe
1=Very severe
How often have you 5=Never
been bothered by 4=Rarely
Global10 In the past 7 days emotional problems such 3=Sometimes
as feeling anxious, 2=Often
depressed or irritable? 1=Always

After recoding, the Global Physical Health score is generated by summing responses to Global03, Global06,
Global07rescored, and Global08rescored. The Global Mental Health score is generated by summing responses to
Global02, Global04, Global05, and Global10rescored.

Raw score to T-score conversion tables: The following conversion tables allow a user to convert simple summed
raw scores from PROMIS global into T-score values on an individual respondent or group of respondents. In all
cases, these conversions only work accurately when all questions on the short form have been answered. T-score
distributions are standardized such that a 50 represents the average (mean) for the US general population, and
the standard deviation around that mean is 10 points. A high score always represents more of the concept being
measured. Thus, a person who has T-scores of 60 for the Global Physical Health or Global Mental Health scales is
one standard deviation better (more healthy) than the general population

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 Physical Mental
Short Form Conversion Table Short Form Conversion Table
Raw.Score T.Score SE* Raw.Score T.Score SE*
4 16.2 4.8 4 21.2 4.6
5 19.9 4.7 5 25.1 4.1
6 23.5 4.5 6 28.4 3.9
7 26.7 4.3 7 31.3 3.7
8 29.6 4.2 8 33.8 3.7
9 32.4 4.2 9 36.3 3.7
10 34.9 4.1 10 38.8 3.6
11 37.4 4.1 11 41.1 3.6
12 39.8 4.1 12 43.5 3.6
13 42.3 4.2 13 45.8 3.6
14 44.9 4.3 14 48.3 3.7
15 47.7 4.4 15 50.8 3.7
16 50.8 4.6 16 53.3 3.7
17 54.1 4.7 17 56.0 3.8
18 57.7 4.9 18 59.0 3.9
19 61.9 5.2 19 62.5 4.2
20 67.7 5.9 20 67.6 5.3
*SE = Standard Error *SE = Standard Error

Conversion Table applies only when ALL questions on the subdomain have been answered
Hays, R. D., Bjorner, J., Revicki, R. A., Spritzer, K. L., & Cella, D. (2009). Development of physical and mental health summary scores from the Patient
Reported Outcomes Measurement Information System (PROMIS) global items. Quality of Life Research, 18(7),873-80. (PMCID: PMC2724630)

Estimating EuroQoL (EQ-5D) index scores: Revicki et al (2009) outlined how to use the PROMIS Global Health
short form to calculate a EuroQoL (EQ-5D) index score. To begin, use the instructions on page 1 to re-score
Global07, Global08, and Global10. Then, use the following formula:

EQ5D score = 0.19123 + (0.00672 * Global2) + (0.00527 * Global3) + (0.00830 * Global4) + (0.04550 * Global6) +
(0.02713 * Global7rescored) + (0.01305 * Global8rescored) + (0.00613 * Global9) + (0.02502 * Global10rescored)

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)

DATA COLLECTION REFERENCE GUIDE STROKE | 10

Instructions for the simplified modified Rankin Scale
questionnaire (smRSq)
Simplified modified Rankin Scale questionnaire: The simplified modified Rankin questionnaire (smRSq)
was developed as a tool to improve the assessment of the modified Ranking scale [1]. An updated version of
the smRSq was published in 2011 [2]. The smRSq flow chart can be found at http://stroke.ahajournals.org/
content/42/8/2276 to provide the interview procedure for clinicians.

Assessment recommendations: The assessment time with the smRSq is relatively short, less than 2 minutes.
The smRSq has been validated for phone assessment [2] and with quality of life [2], stroke severity [3, 4], and
stroke size [5].

Instructions for using the smRSq:

1. Ask each question in order from top to bottom following the arrows in the flow chart in the link above.
2. One may repeat and clarify the questions if needed, but to maintain consistency across raters do not
elaborate or provide examples or guide the interviewee.
3. To enhance accuracy, use all available sources of information, especially caregivers when available.
4. When the answer is not clear (falls between two scores), use the higher score.

Translations: The smRSq was originally developed in English. The smRSq has been translated and validated in
Chinese stroke patients versus the standard mRS interview and stroke severity [6].

smRSq contact information:

Dr. Askiel Bruno abruno@gru.edu

Department of Neurology
Medical College of Georgia
1120 15th St BI 3076,
Augusta, GA 30912
USA

References
[1] Bruno A, Shah N, Lin C, Close B, Hess DC, Davis K, Baute V, Switzer JA, Waller JL, Nichols FT. Improving modified Rankin Scale assessment with a simplified
questionnaire. Stroke. 2010 May;41(5):1048-50.

[2] Bruno A, Akinwuntan AE, Lin C, Close B, Davis K, Baute V, Aryal T, Brooks D, Hess DC, Switzer JA, Nichols FT. Simplified modified rankin scale
questionnaire: reproducibility over the telephone and validation with quality of life. Stroke. 2011 Aug;42(8):2276-9.

[3] Bruno A, Close B, Switzer JA, Hess DC, Gross H, Nichols FT 3rd, Akinwuntan AE.Simplified modified Rankin Scale questionnaire correlates with stroke
severity. Clin Rehabil. 2013 Aug;27(8):724-7.

[4] Bruno A, Close B, Gomadam A, Akinwuntan AE, Switzer JA. The simplified mRS questionnaire reflects stroke severity. Int J Stroke 2013;8:E55.

[5] Bruno A, Shah N, Akinwuntan AE, Close B, Switzer JA. Stroke size correlates with functional outcome on the simplified modified Rankin Scale questionnaire.
J Stroke Cerebrovasc Dis. 2013 Aug;22(6):781-3.

[6] Yuan JL; Bruno A; Li T; Li SJ; Zhang XD; Li HY; Jia K; Qin W; Chen AC; Hu WL. Replication and extension of the simplified modified Rankin scale in 150
Chinese stroke patients. European Neurology, 2012; Vol. 67 (4), pp. 206-10.

DATA COLLECTION REFERENCE GUIDE STROKE | 11

 CASE-MIX VARIABLES

Introduction to the Data Dictionary

This data dictionary is designed to help you measure the ICHOM Stroke Standard Set as consistently as possible
to the Working Group recommendation. ICHOM is actively preparing for benchmarking efforts based on this
data, and all data submitted for comparisons will need to be transformed into the following data structure if not
already structured as such. We are happy to provide an Excel version of this data dictionary for technical use.

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.

Case-Mix Variables
Variable ID: N/A
Variable: Patient ID
Definition: Create a unique patient identifier (e.g. medical record number)
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

Demographic Factors
Variable ID: AGE
Variable: Age
Definition: Date of birth
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Clinical, patient-reported, or administrative data
Type: Date by DD/MM/YYYY
Response Options: DD/MM/YYYY
Variable ID: SEX
Variable: Sex
Definition: Please indicate the patient's sex at birth
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Clinical, patient-reported, or administrative data
Type: Single answer
Response Options: 0 = Male
1 = Female
999 = Undisclosed
Variable ID: ETHNIC
Variable: Ethnicity
Definition: Varies by country and should be determined by country (not for cross country
comparison)
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
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 CASE-MIX VARIABLES
Data Source: Patient-reported
Type: Single answer
Response Options: N/A
Variable ID: LIVINGLOCPRE
Variable: Living location pre index event
Definition: Where were you living prior to your stroke or transient ischaemic attack (TIA)?
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
Response Options: 1 = At home, with no community support
2 = At home with community support
3 = In an assisting living home in the community (senior's home)
4 = In a rehabilitation hospital or skilled care facilities (SNIF, IRF, LTACH)
5 = In long term care (nursing home, chronic care hospital)
888 = Other
999 = Unknown
Variable ID: LIVINGLOCPOST
Variable: Living location post index event
Definition: Where are you living now?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: 90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 1 = At home, with no community support
2 = At home with community support
3 = In an assisting living home in the community (senior's home)
4 = In a rehabilitation hospital or skilled care facilities (SNIF, IRF, LTACH)
5 = In long term care (nursing home, chronic care hospital
6 = In an acute care hospital
888 = Other
999 = Unknown
Variable ID: LIVEALONEPRE
Variable: Living alone pre-index event
Definition: Did you live alone prior to your stroke or transient ischaemic attack (TIA)?
Supporting Definition: N/A
Inclusion Criteria: If "1 = At home, with no community support"
Timing: Admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 1 = Yes, I lived alone
2 = No, I shared my household with spouse/partner or other person (e.g. sibling,
children, parents)
999 = Unknown
Variable ID: LIVEALONEPOST
Variable: Living alone post-index event
Definition: Do you live alone now?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: 90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 1 = Yes, I live alone
2 = No, I share my household with spouse/partner or other person (e.g. sibling,
children, parents)
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 CASE-MIX VARIABLES
999 = Unknown
Variable ID: PRESTROKEAMB
Variable: Prestroke functional status - Ambulation
Definition: Were you able to walk prior to your stroke or transient ischaemic attack (TIA)?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 1 = Able to walk without help from another person with or without a device
2 = Able to walk with help from another person
3 = Unable to walk
Variable ID: PRESTROKETOILET
Variable: Prestroke functional status - Toileting
Definition: Did you need help from anybody to go to the toilet prior to your stroke or transient
ischaemic attack (TIA)?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 1 = I could manage going to the toilet without assistance
2 = I needed help to go to the toilet
Variable ID: PRESTROKEDRESS
Variable: Prestroke functional status - Dressing
Definition: Did you need help with dressing/undressing prior to your stroke or transient
ischaemic attack (TIA)?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 1 = I could manage dressing/undressing without help
2 = I needed help dressing/undressing

Stroke Type and Severity

Variable ID: STROKETYPE
Variable: Stroke type
Definition: Indicate stroke type
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Clinical
Type: Single answer
Response Options: 1 = Ischemic stroke (IS)
2 = Intracereberal hemorrhage (ICH)
3 = Transient ischemic attack (TIA)
999 = Stroke of unknown type
Variable ID: STROKESEV_NIHSS
Variable: Stroke severity: score
Definition: Stroke severity as measured by the NIH Stroke Scale (NIHSS)
Supporting Definition: Report the raw (uncategorized) NIHSS score
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Clinical
Type: Numeric value
Response Options: Numeric value of the NIHSS score between 1 and 42

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 CASE-MIX VARIABLES

999 = Unknown
Variable ID: EST_STROKESEV_NIHSS_CAT
Variable: Estimated stroke severity: category
Definition: Indicate the estimated stroke severity category by the NIH Stroke Scale (NIHSS)
Supporting Definition: NIHSS categories:
NIHSS score 0 = Category 1: No stroke symptoms
NIHSS score 1-4 = Category 2: Minor
NIHSS score 5-15 = Category 3: Moderate
NIHSS score 16-20 = Category 4: Moderate to severe
NIHSS score 21-42 = Category 5: Severe
Note: if no NIHSS score was recorded and/or insufficient documentation exists to
abstract the full score, then indicate a category based on symptom severity.
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Clinical
Type: Single answer
Response Options: 1 = No stroke symptoms
2 = Minor
3 = Moderate
4 = Moderate to severe
5 = Severe
999 = Unknown
Variable ID: STROKESEV_LOC
Variable: Stroke severity: consciousness
Definition: Indicate the patient’s level of consciousness measured on hospital arrival
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Clinical
Type: Single answer
Response Options: 0 = Fully awake
1 = Somnolent
2 = Coma
999 = Unknown
Variable ID: SYMPTDUR
Variable: Duration of symptoms
Definition: Indicate the duration of the symptoms measured on hospital arrival
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Clinical
Type: Single answer
Response Options: 0 = Less than 4.5 hours
1 = More than 4.5 hours
999 = Unknown

Vascular and Systemic

Variable ID: PRIORSTROKE
Variable: Prior Stroke
Definition: Prior to this hospitalization, have you ever been told by a doctor that you have had
a stroke?
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, clinical, or administrative
Type: Single answer
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 CASE-MIX VARIABLES

Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: PRIORTIA
Variable: Prior TIA
Definition: 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)?
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, clinical, or administrative
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: PRIORMI
Variable: Prior MI
Definition: Have you ever been told by your doctor that you've had a heart attack (this is
sometimes called a myocardial infarction, or MI)?
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, clinical, or administrative
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: CAD
Variable: Coronary artery disease
Definition: Have you ever been told by your doctor that you have coronary artery disease?
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, clinical, or administrative
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: AFIB
Variable: Atrial fibrillation
Definition: Have you ever been told by your doctor that you have atrial fibrillation?
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, clinical, or administrative
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: DIAB
Variable: Diabetes mellitus
Definition: Have you ever been told by your doctor that you have diabetes?
DATA COLLECTION REFERENCE GUIDE STROKE | 16
 CASE-MIX VARIABLES

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, clinical, or administrative
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: HYPERTENS
Variable: Hypertension
Definition: Have you ever been told by a doctor that you have high blood pressure (this is
sometimes called hypertension)?
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, clinical, or administrative
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: HYPERLIP
Variable: Hyperlipidemia
Definition: Have you ever been told by your doctor that you have high cholesterol (this is
sometimes called hyperlipidemia or dyslipidemia)?
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, clinical, or administrative
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: SMOKE
Variable: Smoking status
Definition: Do you currently smoke, or have you smoked cigarettes or tobacco over the past
year?
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
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: ALCOHOL
Variable: Alcohol use
Definition: Do you drink more than one alcoholic drink a day?
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)

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 CASE-MIX VARIABLES
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, clinical, or administrative
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown

Treatment/Care Related
Variable ID: DIAGNOSIS
Variable: Diagnostic evidence base
Definition: Indicate how the diagnosis was made
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Clinical
Type: Single answer
Response Options: 0 = Clinical symptoms alone
1 = Clinical + CT
2 = Clinical + MRI
Variable ID: ADMDATE
Variable: Date of index admission
Definition: Date of admission for index event
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Administrative data
Type: Date by DD/MM/YYYY
Response Options: DD/MM/YYYY
Variable ID: DISCHDATE
Variable: Date of discharge
Definition: Date of discharge from acute care hospital
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge
Data Source: Administrative data
Type: Date by DD/MM/YYYY
Response Options: DD/MM/YYYY
Variable ID: REHAB_IN
Variable: Rehabilitation inpatient acute care
Definition: Did the acute inpatient care include dedicated stroke rehabilitation?
Supporting Definition: Dedicated stroke rehabilitation during acute care
Inclusion Criteria: All patients
Timing: Discharge
Data Source: Administrative or clinical
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: REHAB_OUT
Variable: Rehabilitation post acute care
Definition: Did the post-acute care include dedicated stroke rehabilitation?
Supporting Definition: Dedicated stroke rehabilitation during post-acute care, either hospital based or out
patient/home based

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 CASE-MIX VARIABLES
Inclusion Criteria: All patients
Timing: Discharge
Data Source: Administrative data
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: DISCHDEST
Variable: Discharge destination following acute care hospitalization
Definition: What type of place was the patient discharged to?
Supporting Definition: Indicate the patient’s discharge destination from acute care hospital
Inclusion Criteria: All patients
Timing: Discharge
Data Source: Administrative data
Type: Single answer
Response Options: 1 = Home or community dwelling (not home hospice)
2 = Residential facility
3 = Dedicated inpatient rehabilitation facility
4 = Another acute care hospital
5 = Patient died in hospital
888 = Other
999 = Unknown
Treatment Variables
Treatment Variables
Variable ID: THROMBOLYTICTX
Variable: Thrombolytic therapy
Definition: Indicate if the patient received intravenous thrombolytic therapy
Supporting Definition: Intravenous tissue plasminogen activator
Inclusion Criteria: Ischemic stroke patients
Timing: Discharge
Data Source: Clinical
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: THROMBOLYTICTXDATE
Variable: Date of thrombolytic therapy
Definition: Indicate the date of thrombolytic therapy
Supporting Definition: N/A
Inclusion Criteria: If "1 = Yes" to THROMBOLYTICTX
Timing: Discharge
Data Source: Clinical
Type: Date by DD/MM/YYYY
Response Options: DD/MM/YYYY
Variable ID: THROMBECTTX
Variable: Thrombectomy
Definition: Indicate if the patient underwent thrombectomy
Supporting Definition: Endovascular mechanical clot removal
Inclusion Criteria: Ischemic stroke patients
Timing: Discharge
Data Source: Clinical
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: THROMBECTTXDATE
Variable: Date of thrombectomy

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 Definition: Indicate the date of thrombectomy
Supporting Definition: N/A TREATMENT VARIABLES
Inclusion Criteria: If "1 = Yes" to THROMBOLYTICTX
Timing: Discharge
Data Source: Clinical
Type: Date by DD/MM/YYYY
Response Options: DD/MM/YYYY
Variable ID: HEMICRANITX
Variable: Hemicraniectomy
Definition: Indicate if the patient underwent hemicraniectomy
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge
Data Source: Clinical
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: HEMICRANITXDATE
Variable: Date of hemocraniectomy
Definition: Indicate the date of hemicraniectomy
Supporting Definition: N/A
Inclusion Criteria: If "1 = Yes" to HEMICRANITX
Timing: Discharge
Data Source: Clinical
Type: Date by DD/MM/YYYY
Response Options: DD/MM/YYYY
Outcomes
Acute Complications of Treatment
Variable ID: SYMPICHTHROMBOLYSIS
Variable: Symptomatic intracranial hemorrhage after IV thrombolysis
Definition: Indicate if the patient developed symptomatic intracerebral hemorrhage after
treatment of ischemic stroke with intravenous thrombolysis?
Supporting Definition: N/A
Inclusion Criteria: If "1 = Yes" to THROMBOLYTICTX
Timing: Discharge
Data Source: Clinical
Type: Single answer
Response Options: 0 = No
1 = Yes
Variable ID: SYMPICHTHROMBECTOMY
Variable: Symptomatic intracranial hemorrhage after thrombectomy
Definition: Indicate if the patient developed symptomatic intracerebral hemorrhage after
treatment of ischemic stroke with thrombectomy?
Supporting Definition: N/A
Inclusion Criteria: If "1 = Yes" to THROMBOLYTICTX
Timing: Discharge
Data Source: Clinical
Type: Single answer
Response Options: 0 = No
1 = Yes

Survival and Disease Control

Variable ID: OVERALLSURV
Variable: Overall survival
Definition: Indicate if the patient has died
Supporting Definition: All cause mortality

DATA COLLECTION REFERENCE GUIDE STROKE | 20

 TREATMENT VARIABLES
Inclusion Criteria: All patients
Timing: Discharge;
90 days post admission for index event;
One year after index event;
Tracked ongoing annually for 5 years
(when hospital is able to track this ongoing)
Data Source: Administrative data (e.g. death registry)
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: DATEOFDEATH
Variable: Date of death
Definition: Indicate date of death
Supporting Definition: N/A
Inclusion Criteria: If "1 = Yes" to OVERALLSURV
Timing: Discharge;
90 days post admission for index event;
One year after index event;
Tracked ongoing annually for 5 years
(when hospital is able to track this ongoing)
Data Source: Administrative data (e.g. death registry)
Type: Date by DD/MM/YYYY
Response Options: DD/MM/YYYY
99/99/9999 = Unknown
Variable ID: STROKERECUR
Variable: Report of new stroke within 90 days after admission for stroke
Definition: After your hospitalization for stroke, have you been told by a doctor that you have
had a new stroke?
Supporting Definition: New stroke within 90 days of stroke
Inclusion Criteria: All patients
Timing: Admission for index event
Data Source: Patient-reported or administrative data
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown
Variable ID: SMOKECESS
Variable: Smoking cessation
Definition: Since your hospitalization for stroke, have you smoked tobacco or cigarettes?
Supporting Definition: N/A
Inclusion Criteria: If "1 = Yes" to SMOKE
Timing: 90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 0 = No
1 = Yes
999 = Unknown

Patient-Reported Health Status

Variable ID: POSTSTROKEAMB
Variable: Poststroke functional status - Ambulation
Definition: Are you able to walk?
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 COLLECTION REFERENCE GUIDE STROKE | 21

 Data Source: Patient-reported
Type: Single answer
Response Options: 1 = Able to walk without help from another person with or without a device OUTCOMES
2 = Able to walk with help from another person
3 = Unable to walk
Variable ID: POSTSTROKETOILET
Variable: Poststroke functional status - Toileting
Definition: Do you need help from anybody to go to the toilet?
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
Response Options: 1 = I can manage going to the toilet without assistance
2 = I need help to go to the toilet
Variable ID: POSTSTROKEDRESS
Variable: Poststroke functional status - Dressing
Definition: Do you need help with dressing/undressing?
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
Response Options: 1 = I can manage dressing/undressing without help
2 = I need help dressing/undressing
Variable ID: FEEDING
Variable: Feeding
Definition: Do you need a tube for feeding?
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
Response Options: 0 = No
1 = Yes
Variable ID: COMMUNIC
Variable: Ability to communicate
Definition: Do you have problems with communication or understanding?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 0 = No
1 = Yes
Variable ID: PROMIS-10_Q01
Variable: Global01
Definition: In general, would you say your health is:
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
DATA COLLECTION REFERENCE GUIDE STROKE | 22
 OUTCOMES
Type: Single answer
Response Options: 5 = Excellent
4 = Very good
3 = Good
2 = Fair
1 = Poor
Variable ID: PROMIS-10_Q02
Variable: Global02
Definition: In general, would you say your quality of life is:
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 5 = Excellent
4 = Very good
3 = Good
2 = Fair
1 = Poor
Variable ID: PROMIS-10_Q03
Variable: Global03
Definition: In general, how would you rate your physical health?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 5 = Excellent
4 = Very good
3 = Good
2 = Fair
1 = Poor
Variable ID: PROMIS-10_Q04
Variable: Global04
Definition: In general, how would you rate your mental health, including your mood and your
ability to think?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 5 = Excellent
4 = Very good
3 = Good
2 = Fair
1 = Poor
Variable ID: PROMIS-10_Q05
Variable: Global05
Definition: In general, how would you rate your satisfaction with your social activities and
relationships?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event

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 OUTCOMES
Data Source: Patient-reported
Type: Single answer
Response Options: 5 = Excellent
4 = Very good
3 = Good
2 = Fair
1 = Poor
Variable ID: PROMIS-10_Q06
Variable: Global09
Definition: In general, please rate how well you carry out your usual social activities and roles.
(This includes activities at home, at work and in your community, and
responsibilities as a parent, child, spouse, employee, friend, etc.)
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 5 = Excellent
4 = Very good
3 = Good
2 = Fair
1 = Poor
Variable ID: PROMIS-10_Q07
Variable: Global06
Definition: To what extent are you able to carry out your everyday physical activities such as
walking, climbing stairs, carrying groceries, or moving a chair?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 5 = Completely
4 = Mostly
3 = Moderately
2 = A little
1 = Not at all
Variable ID: PROMIS-10_Q08
Variable: Global10
Definition: In the past 7 days, how often have you been bothered by emotional problems such
as feeling anxious, depressed or irritable?
Supporting Definition: N/A
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
Variable ID: PROMIS-10_Q09
Variable: Global08
Definition: In the past 7 days, how would you rate your fatigue on average?
Supporting Definition: N/A

DATA COLLECTION REFERENCE GUIDE STROKE | 24

 OUTCOMES
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: 1 = None
2 = Mild
3 = Moderate
4 =Severe
5 = Very severe
Variable ID: PROMIS-10_Q10
Variable: Global07
Definition: In the past 7 days, how would you rate your pain on average?
Supporting Definition: Indicate pain level on a scale of 0-10, where 0 = No pain, and 10 = Worst imaginable
pain
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Patient-reported
Type: Single answer
Response Options: Numerical value between 0 and 10

Clinician-Reported Health Status

Variable ID: smRSq
Variable: Simplified modified Rankin Scale Questionnaire (smRSq)
Definition: Indicate the degree of disability or dependence by obtaining the smRSq
Supporting Definition: The link to the smRSq flow chart and instructions for use can be found in this
Reference Guide on page 11
Inclusion Criteria: All patients
Timing: Discharge + 7 days;
90 days post admission for index event
Data Source: Clinical
Type: Single answer
Response Options: 0 = No symptoms at all
1 = No significant disability despite symptoms; able to carry out all usual duties and
activities
2 = Slight disability; unable to carry out all previous activities but able to look after
own affairs without assistance
3 = Moderate disability ; requiring some help, but able to walk without assistance
4 = Moderately severe disability; unable to walk without assistance and unable to
attend to own bodily needs without assistance
5 = Severe disability; bedridden, incontinent and requiring constant nursing care
and attention

DATA COLLECTION REFERENCE GUIDE STROKE | 25

ICHOM Contact Information
Website http://www.ichom.org

14 Arrow Street, Suite #11

Business Address
Cambridge, MA 02138

DATA COLLECTION REFERENCE GUIDE STROKE | 26

Reference Guide Revisions
Reference Guide Version Location within Reference Guide Content Change
Removed inactive email address:
1.0.1 Contact Information
ichomteam@ichom.org
Collecting Patient- and Clinician- Changed licensing information for
1.0.1
Reported Outcome Measures smRSq
2.0.0 Follow-Up Timeline Time point definitions changed
Changes were made to
the following variables:
LIVINGLOCPOST, LIVEALONEPRE,
LIVEALONEPOST, PRESTROKEAMB,
PRESTROKETOILET,
PRESTROKEDRESS, EST_
2.0.0 Data Dictionary
STROKESEV_NIHSS_CAT,
STROKESEV_LOC, SYMPTDUR,
CAD, REHAB_IN, DISCHDEST,
THROMBOLYTICX, OVERALLSURV,
STROKERECUR, SMOKECESS.
COMFCARE was removed.
Amended response option for
2.0.1 Data Dictionary
PROMIS-10_Q10

DATA COLLECTION REFERENCE GUIDE STROKE | 27

 www.ichom.org

REFERENCE
DATA COLLECTION USER GUIDE
MANUAL STROKE | 28
CORONARY ARTERY DISEASE