Research Program Overview

Research Program OverviewRuth Brannon, MSPH, MAAssociate Director, Division of Research SciencesNational Institute on Disability and Rehabilitation ResearchOffice of Special Education and Rehabilitative ResearchU.S. Department of Education

Ruth Brannon, MSPH, MAAssociate Director, Division of Research SciencesNational Institute on Disability and Rehabilitation ResearchOffice of Special Education and Rehabilitative ResearchU.S. Department of Education

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NIDRRNIDRR

Organization DetailsOrganization Details

• Office of Special Education and Rehabilitative Services (OSERS) includes:– Rehabilitation Services Administration (RSA)

– Office of Special Education Programs (OSEP)

– National Institute on Disability and Rehabilitation Research (NIDRR)

• Legislative Authority:– Title II, Rehabilitation Act, as amended

– Assistive Technology Act of 1998

• Office of Special Education and Rehabilitative Services (OSERS) includes:– Rehabilitation Services Administration (RSA)

– Office of Special Education Programs (OSEP)

– National Institute on Disability and Rehabilitation Research (NIDRR)

• Legislative Authority:– Title II, Rehabilitation Act, as amended

– Assistive Technology Act of 1998

NIDRR’s Statutory ChargeNIDRR’s Statutory Charge

To support research to maximize the self-sufficiency individuals with disabilities of all ages

To support research to maximize the self-sufficiency individuals with disabilities of all ages

Domains of NIDRR ResearchDomains of NIDRR ResearchFocus on the WHOLE PERSON

Interacting with SOCIETY

And the ENVIRONMENT

Focus on the WHOLE PERSON

Interacting with SOCIETY

And the ENVIRONMENT

Values That Drive Disability and Rehabilitation Research at NIDRR

ScientificScientificExcellenceExcellenceScientificScientificExcellenceExcellence

ConsumerConsumerRelevanceRelevanceConsumerConsumerRelevanceRelevance

NIDRR 02 Funding for TBINIDRR 02 Funding for TBI

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The Traumatic Brain Injury Model Systems of Care

The Traumatic Brain Injury Model Systems of Care

A project funded by the

National Institute on Disability and Rehabilitation ResearchOffice of Special Education and Rehabilitative Services

United States Department of Education

Current Traumatic Brain Injury Model Systems

Current Traumatic Brain Injury Model Systems

Centers and Key Personnel (cont.)Centers and Key Personnel (cont.)• University of Alabama - Birmingham, AL - Thomas Novack , Ph.D.

• Santa Clara Valley Medical Center - San Jose, CA - Tamara Bushnik, Ph.D.

• Craig Hospital - Englewood, CO - Gale Whiteneck, Ph.D.

• The Spaulding Rehabilitation Hospital - Boston, MA - Mel Glenn, M.D.

• Rehabilitation Institute of Michigan/Wayne State University - Detroit, MI - Robin Hanks, Ph.D.

• Mayo Foundation - Rochester, MN - James Malec, Ph.D.

• Mississippi Methodist Rehabilitation Center - Jackson, MS - Mark Sherer, Ph.D.

• University of Alabama - Birmingham, AL - Thomas Novack , Ph.D.

• Santa Clara Valley Medical Center - San Jose, CA - Tamara Bushnik, Ph.D.

• Craig Hospital - Englewood, CO - Gale Whiteneck, Ph.D.

• The Spaulding Rehabilitation Hospital - Boston, MA - Mel Glenn, M.D.

• Rehabilitation Institute of Michigan/Wayne State University - Detroit, MI - Robin Hanks, Ph.D.

• Mayo Foundation - Rochester, MN - James Malec, Ph.D.

• Mississippi Methodist Rehabilitation Center - Jackson, MS - Mark Sherer, Ph.D.

Centers and Key Personnel (cont.)Centers and Key Personnel (cont.)• JFK - Johnson Rehabilitation Institute - Edison, NJ - Keith Cicerone, Ph.D.

• Mount Sinai School of Medicine - New York, NY - Wayne Gordon, Ph.D.

• Charlotte Institute of Rehabilitation/Carolinas HealthCare System - Charlotte, NC - Flora Hammond, M.D.

• The Ohio State University - Columbus, OH - John Corrigan, Ph.D.

• Moss Rehabilitation Research Institute - Philadelphia, PA - Tessa Hart, Ph.D.

• U. of Pittsburgh Medical Center - Pittsburgh, PA - Ross Zafonte, D.O.

• U. of Texas Southwestern Medical Center - Dallas, TX - Ramon Diaz-Arrastia, M.D., Ph.D.

• Medical College of Virginia - Richmond, VA - Jeffrey Kreutzer, Ph.D.

• University of Washington - Seattle, WA - Kathleen Bell, M.D.

• JFK - Johnson Rehabilitation Institute - Edison, NJ - Keith Cicerone, Ph.D.

• Mount Sinai School of Medicine - New York, NY - Wayne Gordon, Ph.D.

• Charlotte Institute of Rehabilitation/Carolinas HealthCare System - Charlotte, NC - Flora Hammond, M.D.

• The Ohio State University - Columbus, OH - John Corrigan, Ph.D.

• Moss Rehabilitation Research Institute - Philadelphia, PA - Tessa Hart, Ph.D.

• U. of Pittsburgh Medical Center - Pittsburgh, PA - Ross Zafonte, D.O.

• U. of Texas Southwestern Medical Center - Dallas, TX - Ramon Diaz-Arrastia, M.D., Ph.D.

• Medical College of Virginia - Richmond, VA - Jeffrey Kreutzer, Ph.D.

• University of Washington - Seattle, WA - Kathleen Bell, M.D.

Design and DefinitionDesign and Definition

• The first prospective, longitudinal multi-center study conducted to examine the course of recovery and outcomes following the delivery of a coordinated system of acute neurotrauma and inpatient rehabilitation.

• Includes large scale follow-up to 13 years post-injury.

• The first prospective, longitudinal multi-center study conducted to examine the course of recovery and outcomes following the delivery of a coordinated system of acute neurotrauma and inpatient rehabilitation.

• Includes large scale follow-up to 13 years post-injury.

Project ObjectivesProject Objectives

• Demonstrate and evaluate cost-benefit and service delivery outcomes of comprehensive delivery system.

• Demonstrate and evaluate development and application of improved and innovative methods essential to care and rehabilitation of individuals with TBI.

• Participate in multi-center studies of the Brain Injury Model System concept by contributing to a national database.

• Demonstrate and evaluate cost-benefit and service delivery outcomes of comprehensive delivery system.

• Demonstrate and evaluate development and application of improved and innovative methods essential to care and rehabilitation of individuals with TBI.

• Participate in multi-center studies of the Brain Injury Model System concept by contributing to a national database.

Key ComponentsKey Components

1. Comprehensive continuum of services from acute care through community integration

2. Accessibility of care

3. Coordination of services

4. Patient volume

5. Clinical research and evaluation

6. Strong linkages with acute and post-acute personnel

1. Comprehensive continuum of services from acute care through community integration

2. Accessibility of care

3. Coordination of services

4. Patient volume

5. Clinical research and evaluation

6. Strong linkages with acute and post-acute personnel

Key Clinical ComponentsKey Clinical Components

1. Emergency medical services - Level I Trauma Center(s)

2. Acute neurosurgical care

3. Comprehensive inpatient rehabilitation services

4. Long-term interdisciplinary follow-up and rehabilitation services.

1. Emergency medical services - Level I Trauma Center(s)

2. Acute neurosurgical care

3. Comprehensive inpatient rehabilitation services

4. Long-term interdisciplinary follow-up and rehabilitation services.

Definition of TBIDefinition of TBI

• The individual has sustained a TBI external mechanical force causing damage to brain tissue, as evidenced by any of the following:– loss of consciousness

– post-traumatic amnesia (PTA)

– objective neurological findings

– skull fracture

* based on Centers for Disease Control definition

• The individual has sustained a TBI external mechanical force causing damage to brain tissue, as evidenced by any of the following:– loss of consciousness

– post-traumatic amnesia (PTA)

– objective neurological findings

– skull fracture

* based on Centers for Disease Control definition

TBI Model Systems National Database - NIDRR 2/2000 / Thurman DJ, Sniezek JE, Johnson D, Greenspan A. Guidelines for Surveillance of Central Nervous System Injury. National Center for Injury Prevention and Control, Centers for Disease Control and Prevention: Atlanta, GA; 1995.

Database Inclusion CriteriaDatabase Inclusion Criteria

1. The individual is admitted to the system’s hospital emergency department within 24 hours of injury.

2. The individual is 16 years of age or older at the time of injury (no upper limit on age).

3. The individual receives acute care and inpatient rehabilitation within the model system hospitals.

4. Informed consent is signed by patient, family or guardian.

1. The individual is admitted to the system’s hospital emergency department within 24 hours of injury.

2. The individual is 16 years of age or older at the time of injury (no upper limit on age).

3. The individual receives acute care and inpatient rehabilitation within the model system hospitals.

4. Informed consent is signed by patient, family or guardian.

Database ObjectivesDatabase Objectives

1. Study the clinical course of individuals with TBI from time of injury through discharge from acute care and rehabilitation care.

2. Evaluate the recovery and long-term outcome of individuals with TBI.

3. Establish a basis for comparison with other data sources.

4. Demonstrate the costs and benefits of the TBI model care system.

1. Study the clinical course of individuals with TBI from time of injury through discharge from acute care and rehabilitation care.

2. Evaluate the recovery and long-term outcome of individuals with TBI.

3. Establish a basis for comparison with other data sources.

4. Demonstrate the costs and benefits of the TBI model care system.

NIDRR TBI National DatabaseNIDRR TBI National Database

Form I - Acute care: 200 variables

Form II - Follow-up: 210 variables

Follow-up conducted: 1,2,5,10 and 15 years

Follow-up methods: in-person, phone, mail questionnaires

1st year attrition: 30%

2nd year attrition: 44%

Form I - Acute care: 200 variables

Form II - Follow-up: 210 variables

Follow-up conducted: 1,2,5,10 and 15 years

Follow-up methods: in-person, phone, mail questionnaires

1st year attrition: 30%

2nd year attrition: 44%

Study LimitationsStudy Limitations

• Lack of control or comparison group

• Selection bias in sample: urban/rural, greater % of minorities

• Lack of uniformity in treatment across all Centers

• Attrition in follow-up (30% - 1st yr.)

• Inability to systematically track post-acute service utilization

• Lack of control or comparison group

• Selection bias in sample: urban/rural, greater % of minorities

• Lack of uniformity in treatment across all Centers

• Attrition in follow-up (30% - 1st yr.)

• Inability to systematically track post-acute service utilization

Research Issues for Variable SelectionResearch Issues for Variable Selection

I. Premorbid history

II. Demographic characteristics of the population

III. Causes and severity of injury

IV. Nature of diagnoses

V. Types of treatment/services

VI. “Costs” of treatment/services

VII. Measurement and prediction of outcomes including impairment, disability and handicap

I. Premorbid history

II. Demographic characteristics of the population

III. Causes and severity of injury

IV. Nature of diagnoses

V. Types of treatment/services

VI. “Costs” of treatment/services

VII. Measurement and prediction of outcomes including impairment, disability and handicap

I. Premorbid HistoryI. Premorbid History

• History of TBI

• Drug Use

• Alcohol use (NHSDA/BRFSS)

• Arrests/felony incarcerations

• Learning/behavior problems

• History of TBI

• Drug Use

• Alcohol use (NHSDA/BRFSS)

• Arrests/felony incarcerations

• Learning/behavior problems

II. Demographic CharacteristicsII. Demographic Characteristics• Age

• Gender

• Race

• Marital Status

• Residence

• Age

• Gender

• Race

• Marital Status

• Residence

• Zip Code

• Living with

• Level of education

• Employment

• Zip Code

• Living with

• Level of education

• Employment

III. Causes of InjuryIII. Causes of Injury

• Date of injury

• ICD-9 external cause of injury codes

• Protective devices

• Blood alcohol level

• Date of injury

• ICD-9 external cause of injury codes

• Protective devices

• Blood alcohol level

III. Severity of InjuryIII. Severity of Injury

• Glasgow Coma Scale Score

• Revised Trauma Score

• Duration of unconsciousness

• Duration of Post Traumatic Amnesia (GOAT)

• Glasgow Coma Scale Score

• Revised Trauma Score

• Duration of unconsciousness

• Duration of Post Traumatic Amnesia (GOAT)

IV. DiagnosesIV. Diagnoses

• Associated injuries (e.g., SCI)

• Intracranial CT scan findings

• ICD-9 diagnosis codes

• Cause of death

• Associated injuries (e.g., SCI)

• Intracranial CT scan findings

• ICD-9 diagnosis codes

• Cause of death

V. TreatmentsV. Treatments

• Surgical procedure

• Rehospitalizations

• Surgical procedure

• Rehospitalizations

VI. “Costs” of TreatmentVI. “Costs” of Treatment

• Length of stay

• Charges

• Payer source

• Length of stay

• Charges

• Payer source

VII. Measure and Predict Outcome at Follow-upVII. Measure and Predict Outcome at Follow-up

Impairment:

• Mortality

• Subsequent TBI

Impairment:

• Mortality

• Subsequent TBI

VII. Measure and Predict Outcome at Follow-upVII. Measure and Predict Outcome at Follow-up

Disability:

• Disability Rating Scale (DRS)

• Functional Independence Measure (FIM)

• Glasgow Outcome Scale-Extended (GOSE)

• Supervision Rating Scale (SRS)

Disability:

• Disability Rating Scale (DRS)

• Functional Independence Measure (FIM)

• Glasgow Outcome Scale-Extended (GOSE)

• Supervision Rating Scale (SRS)

VII. Measure and Predict Outcome at Follow-upVII. Measure and Predict Outcome at Follow-up

Handicap:

• Living with

• Residence (e.g., private home, SNF, AFC, hospital)

• Marital Status

• Level of education

• Employment

Handicap:

• Living with

• Residence (e.g., private home, SNF, AFC, hospital)

• Marital Status

• Level of education

• Employment

VII. Measure and Predict Outcome at Follow-upVII. Measure and Predict Outcome at Follow-up

Handicap (cont.):

• Drug use

• Alcohol use (NHSDA/BRFSS)

• Transportation

• Income and source

Handicap (cont.):

• Drug use

• Alcohol use (NHSDA/BRFSS)

• Transportation

• Income and source

VII. Measure and Predict Outcome at Follow-upVII. Measure and Predict Outcome at Follow-up

Handicap (cont.):

• Arrests

• Psychiatric problems

• Satisfaction with Life Scale (SWLS)

Handicap (cont.):

• Arrests

• Psychiatric problems

• Satisfaction with Life Scale (SWLS)

Sources of DataSources of Data

• Abstract from medical records

• Pre-existing database

• Specialized data collection forms

• Patient examination/interview/testing

• Family interview

• Abstract from medical records

• Pre-existing database

• Specialized data collection forms

• Patient examination/interview/testing

• Family interview

External DisseminationExternal Dissemination

TBI Model Systems Website

TBIMS.ORG

Age At InjuryAge At Injury

n =3279

Mean = 37 years

GenderGender

n = 3278

RaceRace

Other12%

African American

27%

Caucasian61%

Other12%

African American

27%

Caucasian61%

n = 3278

Marital Status At InjuryMarital Status At Injury

n = 3274

Level of Education At InjuryLevel of Education At Injury

< H.S. 40%

HS Diploma

31 %

Some College

17%

College Degree

12%

< H.S. 40%

HS Diploma

31 %

Some College

17%

College Degree

12%

n = 3080

Employment Status At InjuryEmployment Status At Injury

Employed60%

Student11%

Unemployed18%

Retired/homemaker/other11%

Mgr/prof

Tech/sales

Service

Prod/craft

Oper/fabr/labor

12%

26%

17%

27%

Occupational Category

Other6%

12%

N=3279N=3279

Comparison of Demographic CharacteristicsComparison of Demographic Characteristics

Data Source

Mean Age at Injury % Male % White

% Never Married at

injury

% Employed at Injury

% Not Completed

High School at

Injury

TBI Model Systems

37 75 61 50 60 40

Traumatic Coma Data

Bank30 77 81 44 52 49

SCI Model Systems

32 82 67 54 64 38

SummarySummary

Demographic Characteristics of the Population• Average age = 37

• Male (75%)

• Large minority population (39%)

• Not married at injury (70%)

• High school education or less (71%)

• 60% employed at injury

• Most substantial difference in demographic characteristics between studies is race

Demographic Characteristics of the Population• Average age = 37

• Male (75%)

• Large minority population (39%)

• Not married at injury (70%)

• High school education or less (71%)

• 60% employed at injury

• Most substantial difference in demographic characteristics between studies is race

Etiology of InjuryEtiology of Injury

n = 3258

Falls15%

Other11%

Assault19%

Vehicular55%

Comparison of EtiologyComparison of Etiology

Data Source % Vehicular % Assaults % Falls

TBI Model Systems 55 19 15

Traumatic Coma Data Bank

63 20 14

SCI Model Systems 45 17 18

Missouri TBI Surveillance

53 19 20

Oklahoma TBI Surveillance

43 22 24

Utah TBI Surveillance

54 18 20

Washington TBI Surveillance

55 9 27

Blood Alcohol LevelBlood Alcohol Level

n = 3053n = 3053

At Emergency Department Admission* At Emergency Department Admission*

* excluded cases not

tested = 7%

* excluded cases not

tested = 7%

Negative43%

<100 mg/dl2%

=>100mg/dl55%

SummarySummary

Causes of Injury:

• Primary cause is vehicular (55%), followed by assaults (19%) and falls (15%)

• The % of vehicle-related injuries is similar to other studies; the % of assaults is higher, and the % of falls is lower

• High incidence of alcohol-related injuries (57%)

Causes of Injury:

• Primary cause is vehicular (55%), followed by assaults (19%) and falls (15%)

• The % of vehicle-related injuries is similar to other studies; the % of assaults is higher, and the % of falls is lower

• High incidence of alcohol-related injuries (57%)

History of TBIHistory of TBI

Yes8%

No92% Yes

8%

No92%

n = 3232

Associated InjuriesAssociated Injuries

75%

17%

17%

14%

4%

2%

2%

1%

0% 10% 20% 30% 40% 50% 60% 70% 80%

Amputation

Brachial Plexus

Peripheral Nerve

Spinal Cord

Intra-abdominal

Pneumo/hemothorax

Cranial Nerve

Fracture

Percentage of Patients

75%

17%

17%

14%

4%

2%

2%

1%

0% 10% 20% 30% 40% 50% 60% 70% 80%

Amputation

Brachial Plexus

Peripheral Nerve

Spinal Cord

Intra-abdominal

Pneumo/hemothorax

Cranial Nerve

Fracture

Percentage of Patients

SummarySummary

Severity of Injury:

• Few have previous TBI (8%)

• Majority have severe TBI (66%)

• Majority experience LOC (97%) with an average duration of 3.8 days

• Most experience PTA (97%)

• The majority have at least one bone fracture (75%)

Severity of Injury:

• Few have previous TBI (8%)

• Majority have severe TBI (66%)

• Majority experience LOC (97%) with an average duration of 3.8 days

• Most experience PTA (97%)

• The majority have at least one bone fracture (75%)

SummarySummary

Costs of Treatment:

• Average charge is $5,169 per day for acute care and $1,455 per day for inpatient rehabilitation

• LOS decreased 28% for acute care and 29% for inpatient rehabilitation (1993-2002)

• 38% have government-sponsored care (Medicaid/Medicare) which is higher than that for the general population (26%)

Costs of Treatment:

• Average charge is $5,169 per day for acute care and $1,455 per day for inpatient rehabilitation

• LOS decreased 28% for acute care and 29% for inpatient rehabilitation (1993-2002)

• 38% have government-sponsored care (Medicaid/Medicare) which is higher than that for the general population (26%)

SummarySummary

Disability Outcomes:

• DRS indicates improvement in level of disability from SEVERE DISABILITY at rehab. admission to PARTIAL DISABILITY at 1 and 2 yrs. post-injury

• FIM indicates improvement in functional ability from level requiring MODERATE ASSISTANCE at rehab. admission to MODIFIED INDEPENDENCE at 1 and 2 yrs. post-injury

Disability Outcomes:

• DRS indicates improvement in level of disability from SEVERE DISABILITY at rehab. admission to PARTIAL DISABILITY at 1 and 2 yrs. post-injury

• FIM indicates improvement in functional ability from level requiring MODERATE ASSISTANCE at rehab. admission to MODIFIED INDEPENDENCE at 1 and 2 yrs. post-injury

SummarySummary

Disability Outcomes (cont.):

• Most improvement in level of disability and functional ability occurs during inpatient rehabilitation

• Continued improvement is seen at 1 yr. post-injury

• Level of disability and functional ability appear to plateau between 1 and 2 yrs. post-injury

Disability Outcomes (cont.):

• Most improvement in level of disability and functional ability occurs during inpatient rehabilitation

• Continued improvement is seen at 1 yr. post-injury

• Level of disability and functional ability appear to plateau between 1 and 2 yrs. post-injury

SummarySummary

Handicap Outcomes:

• Most live in a private residence following rehab. discharge (85%)

• Few live alone at rehab. discharge (3%), with the highest proportion living with parent(s) (38%), or other relatives, friends or caregivers (35%)

• 28% are employed at 1 yr. post-injury (60%employed at injury)

Handicap Outcomes:

• Most live in a private residence following rehab. discharge (85%)

• Few live alone at rehab. discharge (3%), with the highest proportion living with parent(s) (38%), or other relatives, friends or caregivers (35%)

• 28% are employed at 1 yr. post-injury (60%employed at injury)

ConclusionsConclusions

Large Minority Population:

• % violence-related injuries is higher than other studies

• Majority have severe TBI

• Rehab. length of stay deceased 28% in the past ninth yrs.

• Functional ability improves from a level requiring MODERATE ASSISTANCE at rehab. admission to MODIFIED INDEPENDENCE at 1 and 2 yrs. post-injury

Large Minority Population:

• % violence-related injuries is higher than other studies

• Majority have severe TBI

• Rehab. length of stay deceased 28% in the past ninth yrs.

• Functional ability improves from a level requiring MODERATE ASSISTANCE at rehab. admission to MODIFIED INDEPENDENCE at 1 and 2 yrs. post-injury

Conclusions (cont.)Conclusions (cont.)

• Functional ability improves most during rehab.; continued improvement at 1 yr. post-injury; plateau between 1 and 2 yrs. post-injury

• Most return to private residences at rehab. discharge with few living alone

• Less community integration than persons without TBI

• Functional ability improves most during rehab.; continued improvement at 1 yr. post-injury; plateau between 1 and 2 yrs. post-injury

• Most return to private residences at rehab. discharge with few living alone

• Less community integration than persons without TBI

Accessible NIDRR Web Pages Accessible NIDRR Web Pages

NIDRR Home page:

www.ed.gov/offices/OSERS/NIDRR

National Center for the Dissemination of Disability Research Home page:

www.ncddr.org

National Rehabilitation Information Center Home page:

www.naric.com/naric

NIDRR Home page:

www.ed.gov/offices/OSERS/NIDRR

National Center for the Dissemination of Disability Research Home page:

www.ncddr.org

National Rehabilitation Information Center Home page:

www.naric.com/naric

For additional informationFor additional information

Ruth Brannon (202) 358-2971

Ruth.Brannon@ed.gov

Ruth Brannon (202) 358-2971

Ruth.Brannon@ed.gov