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1. NIDRRwww.ed.gov/about/offices/list/osers/nidrr TBI Program Overview Ruth Brannon, MSPH, MAAssociate Director, Division of Research Sciences National Institute on Disability and Rehabilitation ResearchOffice of Special Education and Rehabilitative ResearchU.S. Department of Education

2. Overview Part 1:Understanding NIDRR’s mandate, mission and values. Part 2:Understanding NIDRR’s TBI research agenda. Part 3:TBI Model Systems. Part 4:Where to go for further information?

3. Organization 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.

4. Mission Statement • To generate new knowledge and to promote its effective use to improve the abilities of individuals with disabilities to perform activities or their choice in the community and • To expand society’s capacity to provide full opportunities and accommodations for its citizens with disabilities.

5. NIDRR History 1954 Rehabilitation Research Program established, amendment to Vocational Rehab Act (Mary Switzer). 1978 National Institute of Handicapped Research (NIHR) established, amendment to Rehab Act. 1980NIHR moved from the Department of Health, Education and Welfare to Department of Education. 1986 National Institute on Disability and Rehabilitation Research (NIDRR) established, amendment to Rehab Act.

6. Scope of NIDRR Mandate • Cross-Disability • Physical & Mobility impairments. • Sensory impairments. • Cognitive impairments & psychiatric disability. • Cross-Lifespan • Children & youth. • Working-age adults. • Individuals “aging with” life-long and early onset disabilities, and those “aging into” disability in mid- to later life.

7. Domains of NIDRR Research • Focus on the WHOLE PERSON interacting with SOCIETY and the ENVIRONMENT

8. NIDRR’s Core Research Areas • Employment outcomes. • Health and function. • Technology for access and function. • Independent living/community integration. • New emphasis on: • Disability demographics and measurement. • Rehabilitation outcomes measurement.

9. NIDRR’s TBI Research - RRTCs • Mt Sinai RRTC on TBI Interventions: • RCT on adapted cognitive behavioral therapy intervention for depression. • RCT to compare interventions to improve executive functioning and attention. • Assessment of evidence-based practice in post-TBI interventions. • Creation of subjective component of the PART scale to measure participation following TBI.

10. NIDRR’s TBI Research - RRTCs • TIRR RRTC on Community Interventions: • Development and evaluation of a social network mentoring program. • Analysis of racial/ethnic differences in acceptance of disability and community integration needs. • Distance learning program to train family members in rural areas. • Assessment of employers attitudes towards persons with TBI • RCT to assess the effectiveness of a brief substance abuse intervention.

11. NIDRR’s TBI Research-DRRPs • JFK Johnson Rehabilitation Institute • A Prospective Randomized Controlled Trial of the Effectiveness of Amantadine Hydrochloride in Promoting Recovery of Function Following Severe TBI. • University of Akron • Assistive Technology and Cognitive Abilities. • University of Washington • The Effect of Scheduled Telephone Intervention on Outcomes After TBI

12. NIDRR’s TBI Research-FIs • FI Examples: • Brain Injury Association of America-Self Employment Development for Individuals with TBI. • Moss Rehab-Opening the Black Box: The Content and Process of Learning in Inpatient TBI Rehabilitation. • Craig-Mortality and Life Expectancy after TBI Rehabilitation.

13. The TBI Model Systems Program – Brief History • SCI Program – 30 years old. • TBI modeled after SCI Program, established in 1987 with five centers. • Program expanded in 1998 to 17 centers after influx of funds. • Program recompeted in 2002, currently 16 centers, funded at $365,000 for five-year cycle. • National DataCenter also funded for five years at Kessler.

14. The TBI Model Systems Program –Purpose • Demonstrate the benefits of a coordinated system of neurotrauma and rehabilitation care, from acute care through community re-entry. • Conduct innovative research on all aspects of care for those who sustain traumatic brain injuries. • Improve the lives of persons who experience TBI by creating and disseminating new knowledge about the course, treatment, and outcomes related to this condition.

15. Current Traumatic Brain Injury Model Systems

16. Current TBIMS Sites • Charlotte Institute of Rehabilitation (Charlotte, NC). • Craig Hospital (Englewood, CO) • JFK-Johnson Rehabilitation Institute (Edison, NJ) • Mayo Foundation (Rochester, MN) • Medical College of Virginia (Richmond, VA) • Methodist Rehabilitation Center (Jackson, MS) • Moss Rehabilitation Research Institute (Philadelphia, PA) • Mount Sinai School of Medicine (New York, NY)

17. Current TBIMS Sites • Ohio State University (Columbus, OH) • Rehabilitation Institute of Michigan (Detroit, MI) • Santa Clara Valley Medical Center (San Jose, CA) • Spaulding Rehabilitation Hospital (Boston, MA) • University of Alabama (Birmingham, AL) • University of Pittsburgh Medical Center (Pittsburgh, PA) • University of Texas Southwestern Medical Center (Dallas, TX) • University of Washington (Seattle, WA)

18. TBI Longitudinal Data Base • Currently contains admission data on 5,409 individuals. • Has follow-up data on 4, 017 individuals. • Managed by the TBI National Data Center, through a grant from NIDRR to the Kessler Medical Rehabilitation Research and Education Corporation in West Orange, NJ.

19. Design and Definition • The first prospective, longitudinal multi-center study ever conducted which examines 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 15 years post-injury.

20. Definition 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 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.

21. Database Inclusion Criteria • The individual is admitted to the system’s hospital emergency department within 24 hours of injury. • The individual is 16 years of age or older at the time of injury (no upper limit on age). • The individual receives acute care and inpatient rehabilitation within the model system hospitals. • Informed consent is signed by patient, family or guardian.

22. I. Premorbid History • History of TBI. • Drug use. • Alcohol use (NHSDA/BRFSS). • Arrests/felony incarcerations. • Learning/behavior problems.

23. Age Gender Race Marital Status Residence Zip Code Living with Level of education Employment II. Demographic Characteristics

24. III. Causes of Injury • Date of injury. • ICD-9 external cause of injury codes. • Protective devices. • Blood alcohol level.

25. III. Severity of Injury • Glasgow Coma Scale Score. • Revised Trauma Score. • Duration of unconsciousness. • Duration of Post Traumatic Amnesia (GOAT).

26. IV. Diagnoses • Associated injuries (e.g., SCI). • Intracranial CT scan findings. • ICD-9 diagnosis codes. • Cause of death.

27. V. Treatments • Surgical procedures. • Rehospitalizations.

28. VI. “Costs” of Treatment • Length of stay. • Charges. • Payer source.

29. VII. Outcomes at Follow-up • Disability: • Disability Rating Scale (DRS) • Functional Independence Measure (FIM) • Glasgow Outcome Scale-Extended (GOSE) • Supervision Rating Scale (SRS)

30. Living with. Residence (e.g., private home, SNF, AFC, hospital). Marital status. Level of education. Employment. Drug use. Alcohol use (NHSDA/BRFSS). Transportation. Income and source. VII. Outcomes at Follow-up

31. VII. Outcomes at Follow-up • Arrests. • Psychiatric problems. • Satisfaction with Life Scale (SWLS).

32. Sources of Data • Abstract from medical records. • Pre-existing database. • Specialized data collection forms. • Patient examination/interview/testing. • Family interview.

33. Study 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 (23% – 1st yr.). • Inability to systematically track post-acute service utilization. • No further follow-up evaluations if Center defunded.

34. Research Focus in Current TBIMS Program • Interventions Research 12 Studies. • Assessment Methods 8 Studies. • Measurement 7 Studies. • Drug Impact 7 Studies. • Assistive Technology 3 Studies. • Health Services 2 Studies.

35. TBIMS Research Projects(Examples) • Use of assistive technology for self-cueing in a community setting. • fMR study of regional cerebral activation as a predictor of outcome after TBI. • Concurrent validity of tool to detect prior TBI. • Effect of community-based exercise on depression • Quality of life after TBI

36. TBIMS Research Projects(Examples) • Treatment of post-TBI depression. • Treatment of post-TBI fatigue. • Genetic factors in outcome after TBI. • Effect of premature termination of substance abuse treatment following TBI.

37. TBIMS Research Projects (Examples) • Impact of serotonin uptake on depression and recovery. • Rehabilitation by distortion virtual reality and robotics as a combined therapy. • Evaluation of Medicare’s PPS on access to inpatient Rehabilitation. • Driving/community integration • Intervention model of family crisis and support

38. TBIMS Demographics • Demographic Characteristics of the Population in the TBIMS Data Base • 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

39. TBIMS Conclusions • Functional ability improves most during rehabilitation; continued improvement at 1 yr. post-injury; plateau between 1 and 2 yrs. post-injury. • Most return to private residences at rehabilitation discharge with few living alone. • Less community integration than persons without TBI.

40. Key Web Sites • NIDRR home page: www.ed.gov/about/offices/list/osers/nidrr • National Center for the Disseminationof Disability Research home page:www.ncddr.org • National Rehabilitation InformationCenter home page:www.naric.com • TBI National Data Center www.tbindc.org

41. For Additional Information • NIDRR • Main Phone: (202) 245-7640 • Ruth Brannon: • Phone: (202) 245-7278 • E-mail: Ruth.Brannon@ed.gov