Research Program Overview

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

2. 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 • Assistive Technology Act of 1998

3. NIDRR’s Statutory Charge To support research to maximize the self-sufficiency individuals with disabilities of all ages

4. Domains of NIDRR Research Focus on the WHOLE PERSON Interacting with SOCIETY And the ENVIRONMENT

5. Values That Drive Disability and Rehabilitation Research at NIDRR ScientificExcellence ConsumerRelevance

6. NIDRR 02 Funding for TBI

8. Current Traumatic Brain Injury Model Systems

9. 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.

10. 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.

11. Design 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.

12. Project 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.

13. Key Components • Comprehensive continuum of services from acute care through community integration • Accessibility of care • Coordination of services • Patient volume • Clinical research and evaluation • Strong linkages with acute and post-acute personnel

14. Key Clinical Components • Emergency medical services - Level I Trauma Center(s) • Acute neurosurgical care • Comprehensive inpatient rehabilitation services • Long-term interdisciplinary follow-up and rehabilitation services.

15. 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.

16. 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.

17. Database Objectives • Study the clinical course of individuals with TBI from time of injury through discharge from acute care and rehabilitation care. • Evaluate the recovery and long-term outcome of individuals with TBI. • Establish a basis for comparison with other data sources. • Demonstrate the costs and benefits of the TBI model care system.

18. NIDRR 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%

19. 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 (30% - 1st yr.) • Inability to systematically track post-acute service utilization

20. Research Issues for Variable Selection • Premorbid history • Demographic characteristics of the population • Causes and severity of injury • Nature of diagnoses • Types of treatment/services • “Costs” of treatment/services • Measurement and prediction of outcomes including impairment, disability and handicap

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

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

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

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

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

26. V. Treatments • Surgical procedure • Rehospitalizations

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

28. VII. Measure and Predict Outcome at Follow-up Impairment: • Mortality • Subsequent TBI

29. VII. 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)

30. VII. Measure and Predict Outcome at Follow-up Handicap: • Living with • Residence (e.g., private home, SNF, AFC, hospital) • Marital Status • Level of education • Employment

31. VII. Measure and Predict Outcome at Follow-up Handicap (cont.): • Drug use • Alcohol use (NHSDA/BRFSS) • Transportation • Income and source

32. VII. Measure and Predict Outcome at Follow-up Handicap (cont.): • Arrests • Psychiatric problems • Satisfaction with Life Scale (SWLS)

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

34. External Dissemination TBI Model Systems Website TBIMS.ORG

35. Age At Injury n =3279 Mean = 37 years

36. Gender n = 3278

37. Race n = 3278

38. Marital Status At Injury n = 3274

39. Level of Education At Injury n = 3080

40. Employment Status At Injury N=3279 Student11% Oper/fabr/labor 27% Employed 60% Prod/craft 17% Unemployed 18% Service 26% Tech/sales 12% Mgr/prof 12% Retired/homemaker/other 11% Other 6% Occupational Category

41. Comparison of Demographic Characteristics

42. Summary 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

43. Etiology of Injury n = 3258

44. Comparison of Etiology

45. Blood Alcohol Level At Emergency Department Admission* n = 3053 * excluded cases not tested = 7%

46. Summary 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%)

47. History of TBI n = 3232

48. Associated Injuries

49. Summary 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%)

50. Summary 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%)