DEMOGRAPHICS

ADDRESS

Definition

PURPOSE: To allow an estimate of the extent and type of health care services available in the participant’s vicinity to evaluate how community impacts outcomes.

Geographic identifiers of address and years at address, including the following variables:

Authorization received for collection of street address
Street address 1
City
State

The National Data and Statistical Center will obtain Geo-ID codes on a quarterly basis utilizing addresses provided.

Zip Code of location where person with brain injury is living: - at the time just prior to index TBI (ZipInj) - at discharge from Rehabilitation (ZipDis) - at time of follow-up evaluation (ZipF)

Calculated variable converting various intervals to a standardized format is available.

Form

[X] Form 1
[X] Form 2

Source

Form 1 ZipInj - Pre-Injury History (participant or proxy) Form 1 ZipDis - Abstraction (rehab record) Form 2 ZipF - Interview, Mail-out (participant or proxy) Form 2 AddressConsentF, CityF, StateF, and Street1F - Interview, Mail-out (participant or proxy)

Details

AddressConsentF - Participants should be given the option of opting out of this component of data collection

Leave address fields blank if not applicable or unknown.

If participant is living in a boat, RV or other living situation where they “take their home with them”, record the address they use as their permanent address.

If participant is living in a boat, RV or other living situation where they “take their home with them” and travel frequently (vs. boat being ‘permanently’ docked, or RV being stationary) then skip the GEO-ID question and code zip code as ‘88888- Not Applicable’, as this item is used to look at services available in participant’s area.

ZipDis- Record zip code of first place the person goes after discharge, regardless of how long he/she resided there.

If the person has no residence, record the zip code of the area in which he/she is most likely to be (for example, the homeless shelter they use).

Variables

Form Type	Variable	ID	Question	History
Form 1	ZipDis	568	Zip code after rehab discharge:	2001-01-01 - Variable Added
Form 1	ZipInj	569	What was the zip code at the place where you were living before the injury?	2001-01-01 - Variable Added
Form 2	AddressConsentF	570	Authorization received for collection of street address:	2010-04-01 - Variable Added
Form 2	CityF		City:	2010-04-01 - Variable Added
Form 2	StateF	774	State:	2010-04-01 - Variable Added
Form 2	Street1F		Street address:	2010-04-01 - Variable Added
Form 2	ZipF	794	What is your zip code:	2001-01-01 - Variable Added

Codes and Values

ID	Code	Description
568	66666	Variable Did Not Exist ( Cases admitted to System before 1/1/01 )
568	88888	Not Applicable: Expired in Rehab; Outside US
568	99999	Unknown
569	66666	Variable Did Not Exist ( Cases admitted to System before 1/1/01 )
569	88888	Not Applicable: Expired in Rehab; Outside US
569	99999	Unknown
570	0	No
570	1	Yes
570	66	Variable Did Not Exist
774	AK	Alaska
774	AL	Alabama
774	AR	Arkansas
774	AZ	Arizona
774	CA	California
774	CO	Colorado
774	CT	Connecticut
774	DC	District of Columbia
774	DE	Delaware
774	FL	Florida
774	GA	Georgia
774	HI	Hawaii
774	IA	Iowa
774	ID	Idaho
774	IL	Illinois
774	IN	Indiana
774	KS	Kansas
774	KY	Kentucky
774	LA	Louisiana
774	MA	Massachusetts
774	MD	Maryland
774	ME	Maine
774	MI	Michigan
774	MN	Minnesota
774	MO	Missouri
774	MS	Mississippi
774	MT	Montana
774	NC	North Carolina
774	ND	North Dakota
774	NE	Nebraska
774	NH	New Hampshire
774	NJ	New Jersey
774	NM	New Mexico
774	NV	Nevada
774	NY	New York
774	OH	Ohio
774	OK	Oklahoma
774	OR	Oregon
774	PA	Pennsylvania
774	RI	Rhode Island
774	SC	South Carolina
774	SD	South Dakota
774	TN	Tennessee
774	TX	Texas
774	UT	Utah
774	VA	Virginia
774	VT	Vermont
774	WA	Washington
774	WI	Wisconsin
774	WV	West Virginia
774	WY	Wyoming
774	666	Variable Did Not Exist
774	888	Not Applicable
774	999	Unknown
794	66666	Variable Did Not Exist ( Follow-up evaluation before 7/1/01 )
794	88888	Not Applicable: Person lives outside of the US
794	99999	Unknown

History

Date	Description
2001-01-01	Zip Code added as part of Residence.
2001-07-01	Zip Code becomes a separate variable.
2001-08-20	Added NOTE : purpose added.
2001-08-20	Added NOTE : about estimating zip code if homeless.
2001-08-20	Added NOTE : about first place resides after discharge.
2002-01-01	Added CODE to Form 2 : "0=Variable did not exist".
2002-07-01	Changed CODE : Missing data codes are now 5 characters rather than 1
2002-07-01	Changed CODE : Added patient lived outside US to code “Not Applicable”.
2011-01-25	Added NOTE : how to code zip if participant is homeless at follow-up.
2011-11-08	Added NOTE : to not include time spent in prison towards length of time at address.
2012-01-12	Added NOTE : as a general rule, if a person is living in a sub-acute facility or nursing home and then returns to home, if a person is there for less than 6 months, then use their home address. If more than 6 months, use the program/facility address.
2022-07-01	Added NOTE: If participant is living in a boat, RV or other living situation where they "take their home with them", record the address they use as their permanent address. If participant is living in a boat, RV or other living situation where they "take their home with them" and travel frequently (vs. boat being ‘permanently’ docked, or RV being stationary) then skip the GEO-ID question and code zip code as '88888- Not Applicable', as this item is used to look at services available in participant's area.

BIRTHDATE

Definition

Date of birth of the patient. Only patients 16 years old or older at the time of injury are to be entered into the database.

Form

[X] Form 1
[ ] Form 2

Source

Pre-Injury History (participant or proxy)

Details

If exact date of birth is unknown, then estimate. If month is known but day cannot be estimated, enter the mid-point of the month.

Variables

Form Type	Variable	ID	Question	History
Form 1	Birth	408	What is your date of birth?	1989-10-01 - Variable Added

Codes and Values

ID	Code	Description
408	09/09/9999	Unknown

History

Date	Description
1999-04-02	Changed CODES : revised unknown codes to be compatible with new software.
2003-04-01	Removed CODE : "08/08/8888=N/A"
2006-01-01	Added NOTE : to estimate day of birth, if unknown.

CULTURAL

Definition

Primary Language spoken in the participant’s home
To code this variable, participants will be asked;
“Before the injury, what was the primary language spoken in your home?” (Form 1)
“What is the primary language spoken in your home?” (Form 2)

Languages other than English or Spanish will be recorded in a secondary text field.

Country of birth; To code this variable, participants will be asked “What is your country of birth?” Countries other than the United States will be recorded in a secondary text field.

Years in US; The number of years that a participant has lived in the United States (if they were not born in the US). To code this variable, participants who report a country of birth other than the United States will be asked “How many years have you been in the United States?”

Form

[X] Form 1
[X] Form 2

Source

Form I - Pre-Injury History (participant or proxy)
Form 2 - Interview, Mail-Out (participant or proxy)

Details

For participants enrolled prior to addition of this variable, ask the question at the time of the next Form 2 follow-up.

Primary Language

If 2 or more languages are spoken in the home, try to get the participant to choose which language they consider to be the primary language.

Country of Birth

Country of Birth for participants enrolled prior to addition of this variable; ask the question at the time of the next Form 2 follow-up.

If born in Puerto Rico count as born in the US.

Years in US

This question should only be asked of participants whose country of birth is other than the United States. Therefore, it should be asked after the question on country of birth.

Begin by asking the number of years participants have been in the United States. If less than 1 year, then ask number of months. Code 6 months or greater as 1 year. Code less than 6 months as 0 years.

If participants have lived in the United States intermittently, with periods separated by time spent in another country, record the total number of years spent in the United States. Example - Participant has spent 3-4 months of every year in the US for the last 30 years. To determine the total number of years spent in the US, multiply the 30 years by 3.5 months (mid-point of a “3 - 4” month range). That gives us a total of 105 months in the US. Divide that by 12 months for a total of 8.75 years, and then round up for a total of 9 years spent in the US.

Characteristics

Recommendations for using data collected at Form 2 include two options:

Only use a given response at the time it was collected when analyzing data from that year. This would limit sample size but would be the most accurate use of the variable reflecting the participant’s self-report of length of time in the U.S. at that moment.
Use the variable to derive a value representing a common time point across all individuals who immigrated to the U.S. Any calculated variables derived from this would have to be understood as an estimate and reported as such in publications. For example:
1. Estimated Age of Entry Into the U.S.
  i. Subtracting current age at the time of the response from the reported length of time in the U.S. would be an estimate of age of entry into the U.S. with the understanding that this represents an upper estimate.
  ii. True age of entry may be younger for individuals who have lived for one or more years outside of the U.S. after their initial immigration.
2. Estimated Years in the U.S. at the Time of Injury.
  i. For those who were asked this question at a follow-up time point, subtracting the years since injury at the time this was asked from the response provided would estimate time in the U.S. at the time of injury.
  ii. This can result in a negative number as in this example:

Someone from abroad visiting U.S. relatives has a TBI. After rehabilitation, they return to their home country. They then immigrate to live in the U.S. for 3 years. At their year 5 follow-up, they state they have been living in the U.S. for 3 years. Subtracting 5 from this value results in -2 years in the U.S. at the time of injury.

In this case, the value can be counted as 0 years in the U.S. at the time of injury.

Variables

Form Type	Variable	ID	Question	History
Form 1	CountryBirthF	420	What is your country of birth?	2012-10-01 - Variable Added
Form 1	CountryBirthOthF		Country of birth (if not born in the US):	2012-10-01 - Variable Added
Form 1	LngSpkHmF	519	What is the primary language spoken in your home?	2012-10-01 - Variable Added
Form 1	LngSpkHmOthF		Language spoken (if not English or Spanish):	2012-10-01 - Variable Added
Form 1	YearsinUSF	566	How many years have you been in the United States (if not born in the US)?	2012-10-01 - Variable Added
Form 1	YearsinUSFUPF	567	Followup period when years spent in the US was asked:	2012-10-01 - Variable Added
Form 2	CountryBirthF	616	What is your country of birth?	2012-10-01 - Variable Added
Form 2	CountryBirthOthF		Country of birth (if not born in the US):	2012-10-01 - Variable Added
Form 2	LngSpkHmF	723	What is the primary language spoken in your home?	2012-10-01 - Variable Added
Form 2	LngSpkHmOthF		Language spoken (if not English or Spanish):	2012-10-01 - Variable Added
Form 2	YearsInUSF	792	How many years have you been in the United States?	2012-10-01 - Variable Added
Form 2	YearsinUSFUPF	7842	Followup period when years spent in the US was asked:	2012-10-01 - Variable Added

Codes and Values

ID	Code	Description
420	1	United States
420	2	Other Than United States
420	77	Refused
420	99	Unknown
519	1	English
519	2	Spanish
519	3	Other Language
519	77	Refused
519	99	Unknown
566	777	Refused
566	888	Not Applicable: Born in US
566	999	Unknown
567	888	Not Applicable: Born in US
567	999	Unknown
616	1	United States
616	2	Other Than the United States
616	77	Refused
616	99	Unknown
723	1	English
723	2	Spanish
723	3	Other Language
723	77	Refused
723	99	Unknown
792	777	Refused
792	888	Not Applicable: Born in US
792	999	Unknown
7842	888	Not Applicable: Born in US
7842	999	Unknown

History

Date	Description
2012-10-01	Added to Database
2013-10-09	Added NOTE : If participants have lived in the United States intermittently, how to calculate.
2016-01-01	Added NOTE : if born in Puerto Rico count as born in the US.
2021-10-26	Added CHARACTERISTICS : "Recommendations for using data collected at Form 2 include 2 options: ..."

DEMOGRAPHICS - CALCULATED

Definition

Age at Injury

BMI (Body Mass Index at Injury) (kg/m2) is calculated from height in inches and weight in pounds as [weight/(height)^2]*703

BMI Category classifies BMI into categories between severely underweight to very severely obese, using the BMI calculated from height and weight

RuralF (Urbanicity) - Urbanization based on zip code of address.

Variables

Form Type	Variable	ID	Question	History
Form 1	AGE	392	Age at Injury	1989-10-01 - Variable Added
Form 1	AGENoPHI	393	Age Calculated for NonPHI	2009-10-01 - Variable Added
Form 1	BMI	3348	BMI at Injury	2012-10-01 - Variable Added
Form 1	BMICat	409	BMI Category	2012-10-01 - Variable Added
Form 1	RURALadm	4153	Urbanization based on zip code of address at admission.
Form 1	RURALdc	4153	Urbanization based on zip code of address at discharge.
Form 2	BMICatF	600	BMI Category	2012-10-01 - Variable Added
Form 2	BMIF	3597	BMI at Followup	2012-10-01 - Variable Added
Form 2	RuralF	765	Urbanicity	2012-10-01 - Variable Added

Codes and Values

ID	Code	Description
392	9999	Unknown
393	777	89 Years Old or Older
393	999	Unknown
409	1	Very severely underweight
409	2	Severely underweight
409	3	Underweight
409	4	Normal
409	5	Overweight
409	6	Obese Class I
409	7	Obese Class II
409	8	Obese Class III
600	1	Very severely underweight
600	2	Severely underweight
600	3	Underweight
600	4	Normal
600	5	Overweight
600	6	Obese Class I
600	7	Obese Class II
600	8	Obese Class III
600	99	Unknown
765	1	Rural
765	2	Urban
765	3	Suburban
4153	1	Rural
4153	2	Urban
4153	3	Suburban

History

No history found for the Domain.

GEOGRAPHIC IDENTIFIERS (GEO-ID) - CALCULATED

Definition

PURPOSE: To allow an estimate of the extent and type of health care services available in the participant’s vicinity to evaluate how community impacts outcomes.

The geographic identifier (geo-id) variables listed below are retrieved quarterly from the U.S. Census website. They are aligned with a TBIMS participant’s address, which is collected at Form 2. An individual subject may have multiple addresses (collected at different follow-up time points) and therefore multiple sets of geo-id variables. At each quarterly submission, new geo-id variables are added to correspond to newly-collected addresses. If a participant did not consent to have their address collected, they will not have any geo-id data associated with them. All of the following variables are of String type.

CensusTract – This is a unique, 11-digit code that identifies a census tract within a certain state/county. Census tract numbers are not unique across states and counties. This 11-digit code has been concatenated with a 2-digit state code (StateCode) and a 3-digit county code (CountyCode) to form a unique, 11-digit census tract code.
CensusBlock – This is a non-unique, 4-digit census block code from the U.S. Census. Census block numbers are not unique across states and counties. This code must be concatenated with a 2-digit state code (StateCode) and a 3-digit county code (CountyCode) to form a unique, 9-digit census block code.
StateCode – This is a 2-digit state code from the U.S. Census.
CountyCode – This is a 3-digit county code from the U.S. Census.
TractString – This is a non-unique, 6-digit census tract code from the U.S. Census. Census tract numbers are not unique across states and counties. This code is concatenated with the 2-digit state code (StateCode) and the 3-digit county code (CountyCode) to form the CensusTract variable.

Variables

Form Type	Variable	Question
Form 2	CensusBlock	Census Block
Form 2	CensusTract	The 11-digit census tract that is a concatenation of STATEA, COUNTYA, and TRACTA
Form 2	CountyCode	County code from U.S. Census
Form 2	StateCode	State Code from U.S. Census
Form 2	TRACTA	This is a non-unique, 6-digit census tract code from the U.S. Census. Census tract numbers are not unique across states and counties. This code is concatenated with the 2-digit state code (StateCode) and the 3-digit county code (CountyCode) to form the CensusTract variable.

Codes and Values

No codes found for the given group IDs.

History

No history found for the Domain.

HOUSEHOLD

Definition

Primary person with whom the person with TBI is living with at time of evaluation, according to the best source of information (person with brain injury unless unavailable or unreliable).

LivWhoInj - at time just prior to injury
LivWhoDis - at discharge from Rehabilitation
LivWhoF - Person Living with Currently: Primary

Form

[X] Form 1
[X] Form 2

Source

Form 1 LiveWhoInj - Pre-Injury History (participant or proxy)
Form 1 LivWhoDis - Abstraction (rehab record)
Form 2 LivWhoF - Interview, Mail-Out (participant or proxy)

Details

If living with more than one person, list the person most involved in the patient’s life and care.

Characteristics

On 4/1/2022, the response categories were collapsed from the following coding choices;
1 - Alone; 2 - Spouse; 3 - Parent(s); 4 - Sibling(s); 5 - Child/Children Under 21 Years Of Age; 6 - Other Relative(s) Or Adult Child/Children 21 Years Of Age Or Older; 7 - Roommate(s) Or Friend(s); 8 - Significant Other; 9 - Other Patients; 10 - Other Residents (Group Living Situation); 11 - Personal Care Attendant; 77 - Other (Includes Correctional Facility Inmates); 99 - Unknown

…to the choices below;
1. Alone, 2. With spouse or significant other, 3. Other family, 4. Someone else, 99. Unknown (LivWhoDis has an additional code of 88-Not Applicable: Expired in Rehab.)

Existing cases were recoded as follows;
- Cases coded as ‘4 - Sibling(s)’, ‘5 - Child/Children Under 21 Years Of Age’, or ‘6 - Other Relative(s) Or Adult Child/Children 21 Years Of Age Or Older’ were recoded to ‘3 - Other Family’.
- Cases coded as ‘7 - Roommate(s) Or Friend(s)’, ‘9 - Other Patients’, ‘10 - Other Residents (Group Living Situation)’, ‘11 - Personal Care Attendant’, ‘77 - Other (Includes Correctional Facility Inmates)’, were recoded to ‘4. Someone else’.
- Cases coded as ‘8 - Significant Other’ were recoded to ‘2 Spouse’.

Variables

Form Type	Variable	ID	Question	History
Form 1	LivWhoDis	7834	Primary person living with after rehab discharge:	1989-10-01 - Variable Added
Form 1	LivWhoInj	518	Before the injury, who was the primary person living with you?	1989-10-01 - Variable Added
Form 2	LivWhoF	7804	Who are you currently living with?	1989-10-01 - Variable Added

Codes and Values

ID	Code	Description
518	1	Alone
518	2	Spouse or Significant Other
518	3	Other Family
518	4	Someone Else
518	99	Unknown
7804	1	Alone
7804	2	Spouse or significant other
7804	3	Other family
7804	4	Someone else
7804	99	Unknown
7834	1	Alone
7834	2	With spouse or significant other
7834	3	Other family
7834	4	Someone else
7834	88	NA: Expired in Rehab
7834	99	Unknown

History

Date	Description
1994-02-01	Deleted NOTE : reference to Level I data collection.
1994-08-19	Deleted NOTE : regarding collecting data from subject and SO.
1994-08-19	Added CODE : "88-Not Applicable: Expired in rehab"
1994-08-19	Added NOTE : about selecting the person to record, if subject is living with more than one person.
1994-09-13	Deleted NOTE : living with at time of acute discharge.
1995-07-01	Removed VARIABLE : 2nd and 3rd persons living with, revised code 88 to correspond.
1995-07-01	Removed CODE Form 2 : "88-Not Applicable: Expired in rehab"
2004-07-01	Added NOTE : to obtain from the “Best Source of Information”.
2006-01-01	Added NOTE : If lives in a boarding house, use code "10 - Other Residents".
2008-04-01	Changed CODE : "77 - Other (Includes correctional facility inmates)" to "77 - Other".
2022-04-01	Changed CODES : Code choices reduced to 1. Alone, 2. With spouse or significant other, 3. Other family, 4. Someone else, 99. Unknown. Form 1 LivWhoDis has and additional code - 88. NA Died in Rehab. (Form 1 LiveWhoInj and LiveWhoDis codes were updated on 7/1/2022).

MARITAL

Definition

Form 1 - Marital status at time just prior to injury.

Form 2 - Marital status at follow-up evaluation according to the best source of information (person with brain injury unless unavailable or unreliable).

1 - Single (Never Married) A person who has never married
2 - Married A person who is married, whether legally or by common law
3 - Divorced A person who is legally divorced
4 - Separated Includes both legal separation and living apart from a married partner

Form

[X] Form 1
[X] Form 2

Source

Form 1 Mar - Pre-Injury History (participant or proxy)
Form 2 MarF - Interview, Mail-Out (participant or proxy)

Details

If separated but living together for more than 7 years, code as “2. Married”.

Reference

UAB

Variables

Form Type	Variable	ID	Question	History
Form 1	Mar	525	What is your marital status?	1989-10-01 - Variable Added
Form 2	MarF	726	What is your current marital status?	1989-10-01 - Variable Added

Codes and Values

ID	Code	Description
525	1	Single (Never Married) ( A person who has never married )
525	2	Married ( A person who is married, whether legally or by common law )
525	3	Divorced ( A person who is legally divorced )
525	4	Separated ( Includes both legal separation and living apart from a married partner )
525	5	Widowed
525	7	Other
525	99	Unknown
726	1	Single (Never Married) ( A person who has never married )
726	2	Married ( A person who is married, whether legally or by common law )
726	3	Divorced ( A person who is legally divorced )
726	4	Separated ( Includes both legal separation and living apart from a married partner )
726	5	Widowed
726	7	Other
726	99	Unknown

History

Date	Description
1994-08-19	Delete NOTE : regarding collecting data from subject and SO.
1994-08-19	Changed CODES Form 2 : corrected descriptions to be consistent with Form 1.
1994-09-13	Deleted CODE : "6=cohabitation".
2001-08-20	Added NOTE : obtain from the “Best Source of Information”.
2003-10-01	Added NOTE : that if married more than once, code relative to the most recent.
2007-04-01	Changed CODE : added "A person who is married, whether legally or by common law" to description of Married
2011-04-01	Added CODE Form 2 (MarChange) : "1 - Separation"

PHYSICAL MEASUREMENTS

Definition

Height
Form 1 - Height at baseline (in inches) as documented in either the acute hospital medical record or rehabilitation record.
Form 2 - “How tall are you without shoes?”

Weight
Form 1 - Weight (in pounds) at acute hospitalization as documented in the acute hospital medical record.
Form 2 - “How much do you weigh without shoes?”

Form

[X] Form 1
[X] Form 2

Source

Form 1 Height - Abstraction (acute or rehab record) Form 2 HeightF - Interview, Mail-out (participant or proxy) Form 1 Weight - Abstraction (acute record) Form 2 WeightF - Interview, Mail-Out (participant or proxy)

Details

Height at baseline can be collected from either the acute hospital medical record or rehabilitation record.

Weight should reflect the first measurement taken during acute hospitalization using a scale or bed scale. If unable to determine if recorded weights were measured using a scale or bed scale, use the first recorded weight in the acute hospital medical record. EMS or paramedic reports should not be used to collect weight.

Round up if half inches or pounds are reported.

If the participant notes any arm or leg amputation(s) when asked about height and weight, code 888 - Not Applicable (Any Arm Or Leg Amputation). The Data Collector does NOT need to probe for amputations when asking the height and weight questions.

If there is a height discrepancy between Form 1 and any height reported during follow-up, height should be verified at the next follow-up, and the discrepancy should be corrected on the Form 1 or Form 2 (database and paper file).

Reference

CDC :BMI obesity rate by state; M #53, #54

CDC Survey: The State of Aging and Health in America report assesses the health status and health behaviors of U.S. adults aged 65 years and older and makes recommendations to improve the mental and physical health of all Americans in their later years. The report includes national- and state-based report cards that examine 15 key indicators of older adult health. Data is available for 2003-2004 and 2006-2007.

NHIS National Health Interview Survey (NHIS)

The National Health Interview Survey (NHIS) has monitored the health of the nation since 1957. NHIS data on a broad range of health topics are collected through personal household interviews. For over 50 years, the U.S. Census Bureau has been the data collection agent for the National Health Interview Survey. Survey results have been instrumental in providing data to track health status, health care access, and progress toward achieving national health objectives.

Variables

Form Type	Variable	ID	Question	History
Form 1	Height	510	Height in inches:	2012-10-01 - Variable Added
Form 1	Weight	7813	Weight in pounds:	2012-10-01 - Variable Added
Form 2	HeightF	704	How tall are you without shoes (in Inches)?	2012-10-01 - Variable Added
Form 2	WeightF	7814	How much do you weigh without shoes (in Pounds)?	2012-10-01 - Variable Added

Codes and Values

ID	Code	Description
510	666	Variable Did Not Exist
510	888	Not Applicable (Any Arm Or Leg Amputation)
510	999	Unknown
704	666	Variable Did Not Exist
704	888	Not Applicable (Any Arm Or Leg Amputation)
704	999	Unknown
7813	6666	Variable Did Not Exist
7813	8888	Not Applicable (Any Arm Or Leg Amputation)
7813	9999	Unknown
7814	6666	Variable Did Not Exist
7814	8888	Not Applicable (Any Arm Or Leg Amputation)
7814	9999	Unknown

History

Date	Description
2013-01-01	Added NOTE: If patient self-report and medical record contradict each other, then use the medical record information for height.
2014-04-01	Added CODE : 777 - Not Applicable (Any Arm Or Leg Amputation) to both Height and Weight.
2014-10-01	Deleted NOTE : Weight at acute hospitalization should be the first recorded weight in the acute hospital medical record.
2014-10-01	Added NOTE : Weight should reflect the first measurement taken during acute hospitalization using a scale or bed scale. If unable to determine if recorded weights were measured using a scale or bed scale, use the first recorded weight in the acute hospital medical record. EMS or paramedic reports should not be used to collect weight.
2018-07-01	Added NOTE: If there is a height discrepancy between Form I and any height reported during follow-up, height should be verified at the next follow-up, and the discrepancy should be corrected on the Form I or Form II (database and paper file).

RACE

Definition

Ethnicity - Self-reported Ethnicity for two categories: “Hispanic, Latino, or Spanish”, and “Not Hispanic, Latino, or Spanish”. To code this variable, participants are asked “Are you of Hispanic, Latino, or Spanish origin?”

Race - Self-Reported racial identification for each of the following five categories: “White”, “Black, African American”, “Asian”, “American Indian or Alaskan Native”, and “Native Hawaiian or other Pacific Islander”. To code these variables, participants are asked “What racial group or groups do you most identify as?”. To account for mixed race, all race categories that a participant indicates should be coded.

Form 1 - Follow-up question is asked if more than one race or ethnicity is asked to capture primary race participant identies as - “If you selected more than one race or ethnicity, with which do you identify most strongly?”

Form

[X] Form 1
[X] Form 2

Source

Form I - Pre-Injury History (participant or proxy)
Form 2 - Interview, Mail-Out (participant or proxy)

Details

Patient’s or significant other’s statement is preferred to hospital record information.

Record participant’s statement regarding his/her race, or record race of father.

In obtaining a statement from the participant regarding his/her race/ethnicity, ambiguity may be resolved by asking which race/ethnicity is more important in his/her daily life.

It is acceptable to collect RACE variables from an SO if individual cannot answer for themselves.

The RACE questions are to be asked only once, NOT at every follow-up.

Characteristics

Added CHARACTERISTICS: on 1/15/2023, “What is your race?” was removed from Form 1 data collection and replaced with race questions from Form 2 - “Are you of Hispanic, Latino, or Spanish origin?; and “What racial group or groups do you most identify as? (Select all that apply)”; Race as a single variable is mapped to RacePrimary to ensure consistency with prior data collection

New follow-up question - “If you identified with more than one race in the above questions, what is the race you identify with the most?” was added on 4/1/2023 - This was to insure a crosswalk with the Race variable that was asked prior to the Race Ethnicity split.

Code “6-Biracial or Multiracial” added to Primary Race Question on 10/1/2023

Reference

2000 Census, Department of Commerce: See - External Links

Office of Management and Budgets Federal Register
Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity

Variables

Form Type	Variable	ID	Question	History
Form 1	EthnicityF	674	Are you of Hispanic, Latino, or Spanish origin?	2012-10-01 - Variable Added
Form 1	RaceAsnF	742	Asian:	2012-10-01 - Variable Added
Form 1	RaceBlkF	742	Black, African American:	2012-10-01 - Variable Added
Form 1	RaceIndF	742	American Indian, or Alaskan Native:	2012-10-01 - Variable Added
Form 1	RacePIF	742	Native Hawaiian or other Pacific Islander:	2012-10-01 - Variable Added
Form 1	RacePrimary	541	If you selected more than one race or ethnicity, with which do you identify most strongly?	2023-04-01 - Variable ADDED 2023-10-01 - Code ADDED - "6-Biracial or Multiracial"
Form 1	RaceWhtF	742	White:	2012-10-01 - Variable Added
Form 2	EthnicityF	7843	Are you of Hispanic, Latino, or Spanish origin?	2012-10-01 - Variable Added
Form 2	RaceAsnF	7844	Asian:
Form 2	RaceBlkF	7844	Black, African American:
Form 2	RaceIndF	7844	American Indian or Alaskan Native:
Form 2	RacePIF	7844	Native Hawaiian or other Pacific Islander:
Form 2	RaceWhtF	7844	White:

Codes and Values

ID	Code	Description
541	1	White
541	2	Black
541	3	Asian/Pacific Islander
541	4	Native American
541	5	Hispanic Origin
541	6	Biracial or Multiracial
541	7	Other
541	88	Not Applicable
541	99	Unknown
674	0	No
674	1	Yes
674	66	Variable Did Not Exist
674	77	Refused
674	99	Unknown
742	0	No
742	1	Yes
742	66	Variable Did Not Exist
742	77	Refused
742	99	Unknown
7843	0	No
7843	1	Yes
7843	66	Variable Did Not Exist
7843	77	Refused
7843	99	Unknown
7844	0	No
7844	1	Yes
7844	66	Variable Did Not Exist
7844	77	Refused
7844	99	Unknown

History

Date	Description
1994-09-13	Added CODE Form 1 : "5 - Hispanic"
2001-08-20	Added NOTE : about determining race.
2003-10-01	Added NOTE : that person’s or SO’s information is preferred to hospital records.
2004-04-01	Added LINK : 2000 Census of Population and Housing
2013-01-01	Added NOTE : It is acceptable to collect RACE variables from an SO if individual cannot answer for themselves.
2013-10-01	Added NOTE Form 2 : The RACE questions are to be asked only once, NOT at every follow-up.
2013-10-01	Changed CODE Form 1 : removed "Negro" from the description on "Black" to match the US census wording.
2013-10-01	Changed VARIABLE : changed from "identify with" to "identify as".
2023-01-15	Added CHARACTERISTICS: on 1/15/2023, “What is your race?” was removed from Form 1 data collection and replaced with race questions from Form 2 - “Are you of Hispanic, Latino, or Spanish origin?; and “What racial group or groups do you most identify as? (Select all that apply)”; New follow-up question - “If you identified with more than one race in the above questions, what is the race you identify with the most?” was added.

RESIDENCE

Definition

Where the person with brain injury is living:
ResInj - residence at the time just prior to injury
ResDis - residence at discharge from Rehabilitation
ResF - residence at the time of follow-up evaluation, according to the best source of information (person with brain injury unless unavailable or unreliable)

Residence Codes
1 - Private Residence Includes house, apartment, mobile home, foster home, condominium, dormitory (school, church, college), military barracks, boarding school, boarding home, rooming house, bunk-house, boys ranch, fraternity/sorority house, commune, migrant farmworkers camp
2 - Nursing Home/Subacute Care Includes medi-center, residential, institutions licensed as hospitals but providing essentially long-term, custodial, chronic disease care, etc.
3 - Adult Home Includes adult foster care, indep. living center, transitional living facility, assisted living, supported living, group home
4 - Correctional Institution Includes prison, jail, penitentiary, correctional center, labor camp, halfway house, etc.
5 - Hotel/Motel Includes YWCA, YMCA, guest ranch, inn
6 - Homeless Includes a shelter for the homeless
9 - Hospital: Other Includes mental hospital, inpatient drug treatment

Form

[X] Form 1
[X] Form 2

Source

Form 1 ResInj - Pre-Injury History (participant or proxy)
Form 1 ResDis - Abstraction (rehab record)
Form 2 ResF - Interview, Mail-Out (participant or proxy)

Details

If there is uncertainty regarding residence, treat it as a self-report variable. If residence is not clear, a reliable respondent (when possible, the person with TBI) should be asked, eg., “Where were you [the person with TBI] living (‘prior to injury’, or at ‘follow-up’)?”. If the response is ambiguous (as may happen, eg., if the person is transient) use probes in order to adequately understand the respondent’s belief regarding residence, then code that. Do not probe to obtain additional objective information about the living situation and then (the data collector) use that information in determining the correct code. When residence is at all ambiguous, treat it as a self-report variable.

Patients discharged to temporary living facilities while still enrolled in outpatient programs should be coded according to the level of supervision or assistance they receive. If the facility is for the use of patients and their families, code these transitional residences as “private residence” rather than an “adult home/transitional living facility”, as supervision or assistance in this setting would be provided by the family member or the attendant residing with the person, rather than by a staff overseeing a group of individuals which is more typical in an “adult home/transitional living facility.”

If participant is still in the hospital at follow-up, data collectors are encouraged to find out reason for hospitalization and if they will be discharged while still in the follow-up window. If participant is expected to still be hospitalized when the window closes, then code as ‘7-Hospital (Acute Care)’.

Code government or non-profit subsidized SRO (Single Resident Occupancy) housing as “3-Adult Home (Includes adult foster care, independent living center, transitional living facility, assisted living, supported living, group home)”. Even though some of these vary from a single private room within a larger building or a full apartment, the space that they occupy could be viewed as a transitional and supported living situation given that it is not a permanent housing solution and/or it is funded by government/subsidy.

Participants living in a boat, RV or other living situation where they “take their home with them” should be coded as “Private Residence”.

Links

List of Online Offender Database

Characteristics

Deleted the category “shelter” from code 01 and moved it to 06 as “shelter for the homeless” as of 10/1/2004 meaning that prior to this date, persons in that category are in 01 and after that date they are in 06.

Variables

Form Type	Variable	ID	Question	History
Form 1	ResDis	548	Residence after rehab discharge:	1989-10-01 - Variable Added
Form 1	ResInj	549	Before the injury, where were you living?	1989-10-01 - Variable Added
Form 2	ResF	764	Where do you live now?	1989-10-01 - Variable Added

Codes and Values

ID	Code	Description
548	1	Private Residence ( Includes house, apartment, mobile home, foster home, condominium, dormitory (school, church, college), military barracks, boarding school, boarding home, rooming house, bunk-house, boys ranch, fraternity/sorority house, commune, migrant farmworkers camp )
548	2	Nursing Home/Subacute Care ( Includes medi-center, residential, institutions licensed as hospitals but providing essentially long-term, custodial, chronic disease care, etc. )
548	3	Adult Home ( Includes adult foster care, indep. living center, transitional living facility, assisted living, supported living, group home )
548	4	Correctional Institution ( Includes prison, jail, penitentiary, correctional center, labor camp, halfway house, etc. )
548	5	Hotel/Motel ( Includes YWCA, YMCA, guest ranch, inn )
548	6	Homeless ( Includes a shelter for the homeless )
548	7	Hospital: Acute care
548	8	Hospital: Rehabilitation
548	9	Hospital: Other ( Includes mental hospital, inpatient drug treatment )
548	10	Other
548	888	Not Applicable: Expired in rehab
548	999	Unknown
549	1	Private Residence ( Includes house, apartment, mobile home, foster home, condominium, dormitory (school, church, college), military barracks, boarding school, boarding home, rooming house, bunk-house, boys ranch, fraternity/sorority house, commune, migrant farmworkers camp )
549	2	Nursing Home/Subacute Care ( Includes medi-center, residential, institutions licensed as hospitals but providing essentially long-term, custodial, chronic disease care, etc. )
549	3	Adult Home ( Includes adult foster care, indep. living center, transitional living facility, assisted living, supported living, group home )
549	4	Correctional Institution ( Includes prison, jail, penitentiary, correctional center, labor camp, halfway house, etc. )
549	5	Hotel/Motel ( Includes YWCA, YMCA, guest ranch, inn )
549	6	Homeless ( Includes a shelter for the homeless )
549	7	Hospital: Acute care
549	8	Hospital: Rehabilitation
549	9	Hospital: Other ( Includes mental hospital, inpatient drug treatment )
549	10	Other
549	999	Unknown
764	1	Private Residence ( Includes house, apartment, mobile home, foster home, condominium, dormitory (school, church, college), military barracks, boarding school, boarding home, rooming house, bunk-house, boys ranch, fraternity/sorority house, commune, migrant farmworkers camp )
764	2	Nursing Home/Subacute Care ( Includes medi-center, residential, institutions licensed as hospitals but providing essentially long-term, custodial, chronic disease care, etc. )
764	3	Adult Home ( Includes adult foster care, indep. living center, transitional living facility, assisted living, supported living, group home )
764	4	Correctional Institution ( Includes prison, jail, penitentiary, correctional center, labor camp, halfway house, etc. )
764	5	Hotel/Motel ( Includes YWCA, YMCA, guest ranch, inn )
764	6	Homeless ( Includes a shelter for the homeless )
764	7	Hospital: Acute care
764	8	Hospital: Rehabilitation
764	9	Hospital: Other ( Includes mental hospital, inpatient drug treatment )
764	10	Other
764	999	Unknown

History

Date	Description
1994-08-19	Deleted NOTE : regarding collecting data from subject and SO.
1994-08-19	Deleted CODE Form 2 : "Not Applicable: Expired in rehab"
1994-09-13	Added CODE : Added "adult foster care” to code "3 - Adult Home".
1995-07-01	Changed CODE : removed "skilled nursing facility" from code 2 - Nursing Home".
1995-07-01	Changed CODE : Moved "dormitory (school, church, college), military barracks, boarding school, boarding home, rooming house, bunk-house, boys ranch, fraternity/sorority house, commune, migrant farmworkers camp" from code "3 - Adult Home" to "1 - Private Residence".
1995-07-01	Added CODE : "10=subacute (includes subacte hospital bed, skilled nursing facility)".
1996-04-01	Changed CODE : added "halfway house" to description of code "4 - Correctional Institution".
2001-08-20	Changed CODE Form 2: added “inpatient drug treatment program” to “9 - Hospital-Other".
2004-08-19	Added NOTE : temporary living facilities while still enrolled in outpatient programs should be coded according to the level of supervision or assistance they receive.
2004-10-01	Changed CODE Form 1: added “inpatient drug treatment program” to “9 - Hospital-Other”.
2004-10-01	Changed CODE : deleted "shelter" as a category of "1 -Private".
2004-10-01	Changed CODE : added "shelter for the homeless" to code "6 - Homeless".
2005-01-01	Added NOTE : how to determine residence if not clear.
2006-09-05	Changed CODE Form 2: added "assisted living, supported living" to code "3 - Adult Home".
2013-12-08	Added NOTE : regarding SRO (Single Resident Occupancy) coding.
2016-01-01	Added NOTE: if participant is still in the hospital at follow-up and is expected to still be hospitalized when the window closes, then code as '7-Hospital (Acute Care)'.
2018-10-01	Changed CODES : merged codes "2 - Nursing Home" and "10 - Subacute Care" to "2 - Nursing Home/Subacuate Care".
2022-07-01	Added NOTE : Participants living in a boat, RV or other living situation where they "take their home with them" should be coded as "Private Residence".

SEX

Definition

Current sex of subject

Form

[X] Form 1
[ ] Form 2

Source

Abstraction (acute or rehab record)

Details

If transgender, record current sex.

Variables

Form Type	Variable	ID	Question	History
Form 1	SexF	554	Sex:	1989-10-01 - Variable Added
Form 2	SexF	4026	Sex

Codes and Values

ID	Code	Description
554	1	Female
554	2	Male
554	99	Unknown
4026	1	Female
4026	2	Male
4026	99	Unknown

History

Date	Description
1994-09-13	Deleted CODE : "7 - other".
2001-08-20	Added NOTE : about transsexual.
2025-10-01	Changed "transsexual " to "transgender" in Details.

SOCIOECONOMIC STATUS - CALCULATED

Definition

PURPOSE: To provide information on aspects of the socioeconomic status (SES) in the participant’s vicinity to evaluate how community impacts outcomes.

SES variables were downloaded from the IPUMS (originally, the “Integrated public Use Microdata Series”) website that houses data from the American Community Survey. The SES variables align with census tracts, not TBIMS participants. A TBIMS participant may have multiple census tracts associated with them, one for each follow-up interview where they consented to have their address collected. If a participant did not consent to have their address collected, they will not have any SES data associated with them. Additional variables that provide metadata (information about when the SES data was collected) are included as well. All of the following variables are of String type.

GeoYear – The five-year aggregate American Community Survey dataset that indicates the year the SES variables were collected. For example, a value of 2015-2019 indicates that the SES variables were collected in 2019.
TBIMS_NSDI_2019 – This variable contains a value that indicates the neighborhood disadvantage of a census tract, called the TBI Model Systems Neighborhood Socioeconomic Disadvantage Index. The value can be negative or positive. Positive values indicate more disadvantage. The TBI Model Systems Neighborhood Socioeconomic Disadvantage Index was calculated in 2019 using the first dimension of a principal components analysis of eight census-tract SES indicators (Percent unemployed, Percent Single Parent Led Households, Percent no HS or GED, Percent Bachelor’s Degree or Higher, Percent below the poverty line, Percent of households that were on food stamps/SNAP, Median Household Income, Median Family Income). The index did NOT use the race/ethnicity variables (PercentWhite, PercentBlack, PercentHispanic) in their construction. You can find the specifics of this variable’s creation in Kumar RG, Delgado A, Corrigan JD, Eagye CB, Whiteneck GG, Juengst SB, Callender L, Bogner J, Pinto SM, Rabinowitz AR, Perrin PB, Venkatesan UM, Botticello AL, Lequerica AH, Taylor S, Zafonte RD, Dams-O’Connor K. (2024). The TBI Model Systems Neighborhood Socioeconomic Disadvantage Index (TBIMS-NSDI): Development and Comparison to Individual Socioeconomic Characteristics. J Head Trauma Rehabil. There will be a new TBIMS_NSDI variable every ten years, separate from this one, denoted by the 4-digit year at the end of the variable name.
GeoStatus – This is an indicator variable with a value of Interim or Final. The most recent SES status variables come from the 2015-2019 date range in the American Community Survey (ACS), which is where the data is sourced. There is typically a two-year lag between when the ACS data is collected and when it is available to the public. Therefore, it is possible to have a TBIMS participant’s follow-up date be more recent than the GeoYear. The GeoStatus variable shows whether the date of collection of the SES variables lags the follow-up interview date when a participant’s address was collected (Interim), or whether the two dates match (Final).
PercentUnemployed – The percentage of civilian unemployed (people 16 and over). The formula used to create PercentUnemployed is (# civilian unemployed / # in labor force).
PercentSingleHoH – The percentage of single parent headed households with children <18. The formula used to create PercentUnemployed is ((# male household + # female household) / # in family households).
PercentNoHSorGED – The percentage of people >=25 years old without a high school diploma or GED. The formula used to create PercentNoHSorGED is (No schooling completed + Nursery school + Kindergarten + 1st through 11th grade + 12th grade, no diploma)/Total in CensusTract.
PercentBSorUp – The percentage of of people >=25 years old with a bachelors degree or higher. The formula used to create PercentBSorUp is (Bachelor’s degree + Master’s degree + Professional school degree + Doctorate degree) / Total in CensusTract.
PercentBelowPoverty – The percentage of households with incomes in the past 12 months below poverty level. The formula used to create PercentBelowPoverty is (Income in the past 12 months below poverty level / Total for income versus poverty level).
PercentSNAP – The percentage of households that received Food Stamps/SNAP in the past 12 months. The formula used to create PercentSNAP is (Household received Food Stamps-SNAP in the past 12 months / Total for receipt of SNAP).
MedHHIncome – Median household income in the past 12 months (in inflation-adjusted dollars).
MedFamIncome – Median family income in the past 12 months (in inflation-adjusted dollars).
PercentWhite – The percentage of White Alone in the CensusTract. The formula used to create PercentWhite is (White alone / Total for Race). This variable is not included in the SESIndex variable calculation.
PercentBlack – The percentage of Black or African American Alone in the CensusTract. The formula used to create PercentBlack is (Black or African American alone / Total for Race). This variable is not included in the SESIndex variable calculation.
PercentHispanic– The percentage of Hispanic or Latino in the CensusTract. The formula used to create PercentHispanic is (Hispanic or Latino / Total for Hispanic/Latino). This variable is not included in the SESIndex variable calculation.
STATEA – State Code from U.S. Census
GeoState – State name
COUNTYA – County code from U.S. Census
GeoCounty – County name

Variables

Form Type	Variable	Question	History
Form 2	ACSYEARS	The five-year aggregate dataset imported from IPUMS.
Form 2	GeoCounty	County name
Form 2	GeoState	State name
Form 2	GeoStatus	This is an indicator variable with a value of Interim or Final. The most recent SES status variables come from the 2015-2019 date range in the American Community Survey (ACS), which is where the data is sourced. There is typically a two-year lag between when the ACS data is collected and when it is available to the public. Therefore, it is possible to have a TBIMS participant’s follow-up date be more recent than the GeoYear. The GeoStatus variable shows whether the date of collection of the SES variables lags the follow-up interview date when a participant’s address was collected (Interim), or whether the two dates match (Final).
Form 2	GeoYear	Year Geo Data Collected
Form 2	MedFamIncome	Median family income for the census tract in the past 12 months (in final ACS year inflation-adjusted dollars)
Form 2	MedHHIncome	Median household income for the census tract in the past 12 months (in final ACS year inflation-adjusted dollars)
Form 2	PercentBSorUp	The percentage of of people >=25 years old with a bachelors degree or higher. The formula used to create PercentBSorUp is (Bachelor's degree + Master's degree + Professional school degree + Doctorate degree) / Total in CensusTract.
Form 2	PercentBelowPoverty	The percent of households in the census tract with incomes in the past 12 months below poverty level. The formula used to create PercentBelowPoverty is (Income in the past 12 months below poverty level / Total for income versus poverty level).
Form 2	PercentBlack	The percentage of Black or African American Alone in the CensusTract. The formula used to create PercentBlack is (Black or African American alone / Total for Race). This variable is not included in the SESIndex variable calculation.
Form 2	PercentHispanic	The percentage of Hispanic or Latino in the CensusTract. The formula used to create PercentHispanic is (Hispanic or Latino / Total for Hispanic/Latino). This variable is not included in the SESIndex variable calculation.
Form 2	PercentNoHSorGED	The percentage of people >=25 years old without a high school diploma or GED. The formula used to create PercentNoHSorGED is (No schooling completed + Nursery school + Kindergarten + 1st through 11th grade + 12th grade, no diploma)/Total in CensusTract.
Form 2	PercentSNAP	The percent of households in the census tract who received food stamps/SNAP in the past 12 months
Form 2	PercentSingleHoH	The percentage of single parent headed households with children <18. The formula used to create PercentUnemployed is ((# male household + # female household) / # in family households).
Form 2	PercentUnemployed	The percentage of civilian unemployed (people 16 and over). The formula used to create PercentUnemployed is (# civilian unemployed / # in labor force).
Form 2	PercentWhite	The percentage of White Alone in the CensusTract. The formula used to create PercentWhite is (White alone / Total for Race). This variable is not included in the SESIndex variable calculation.
Form 2	TBIMS_NSDI_2019	indicates the neighborhood disadvantage of a census tract	2024-07-01 - Variable Name Changed: SESIndex2019 was changed to TBIMS_NSDI_2019

Codes and Values

No codes found for the given group IDs.

History

No history found for the Domain.