1. Traumatic Brain Injury: Epidemiology, Issues and Challenges Jean A. Langlois, ScD, MPH Centers for Disease Control and Prevention Institute of Medicine TBI Workshop Washington, DC July 18, 2005

2. What is TBI? A blow or jolt to the head that disrupts -the function of the brain - a person’s life -the lives of their families/caregivers.

3. Is Concussion a TBI? YES! Even people with concussion or “mild” TBI can have serious and long-term problems.

4. What is “mild” TBI? At the time of initial assessment, the observed injury to the brain appears to be mild. Mild TBI does not always result in mild consequences Mild TBI and concussion are frequently missed/not diagnosed.

5. The Silent Epidemic of TBI: One Woman’s Story “Often I go without things I need because I cannot do the simple things expected of me. Now sometimes I can’t comprehend simple words in a sentence, manage incoming mail, fill out forms, …arrange transportation.” Marilyn Gelman

6. Where do CDC national TBI estimates come from? 50,000 Deaths 235,000 Hospitalizations 1,111,000 Emergency Department Visits ??? At least 1.4 million TBIs occur in the United States each year.* * Average annual numbers, NCHS data, 1995-2001

7. Where do CDC state TBI estimates come from? Surveillance of TBI deaths and hospitalizations in 30 states

8. Who do we miss? People with TBI who receive medical care in other settings (e.g. doctors’ offices) People who receive medical care, but the TBI isn’t identified People who receive no medical care -Usually concussion or “mild” TBI, e.g., sports and recreation-related.

9. Who experiences TBI? About two-thirds are male American Indians/Alaska Natives and Blacks have the highest rates Very young children, older adolescents, and adults aged 75 or older are more likely than others to sustain a TBI.

10. Are there any new TBI populations? Increasing numbers of military personnel, especially those exposed to bomb blasts Survivors of terrorism-related attacks, including at the World Trade Center and the Pentagon Increasing numbers of older adults.

11. What are the trends in TBI? Annual numbers of TBI have not changed Overall death rates have decreased More people are surviving TBI and living with disability.

12. At least 90,000 Americans each year sustain TBI resulting in long-term or lifelong disability. How many people in the U.S. have TBI-related disability?

13. How many people have TBI disability by state? Number of new cases of TBI disability each year ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ??? ? ? ? ? ?? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? Study in 20+ states to begin 8/05

14. What are states’ needs for TBI data? All states need their own data… CDC program needs to improve data dissemination HRSA program needs increased knowledge of how to interpret and use the data.

15. DATA AND DATA SYSTEMS SERVICE DELIVERY SYSTEMS LINKING PEOPLE WITH TBI TO SERVICES CDCHRSA STATE TBI ACTIVITIES—CDC & HRSA

16. What happens to people after a TBI? Traumatic brain injury… begins as a medical problem becomes a chronic disabling condition.

17. MEDICAL CARE SERVICES/SUPPORTS LIVING IN THE COMMUNITY

18. How can we reduce TBI-related disability? Information and services are the keys to reducing disability and improving quality of life.

19. What information and services do people with TBI say they need? Information about Brain injury Services and how to get them Services to Improve memory/problem-solving Increase income Improve job skills Manage money Manage stress/emotional upsets. Corrigan et al, 2004; Heinemann et al, 2002; SCTBIFR

20. Which groups most often report unmet TBI service needs? INADEQUATE SOCIAL SUPPORT UNEMPLOYED UNINSURED/MEDICAID LOW COGNITIVE STATUS FAIR/POOR HEALTH NONWHITE MALES <$10,000/YR INCOME 35-54 YEARS OF AGE PREVIOUS TBI <HS EDUCATION SINGLE SC TBI Follow-up Registry, 1-year follow-up data

21. What about services for people with “mild” TBI? Research suggests that they can benefit from Neuropsychological evaluation to determine deficits Vocational assistance to prevent job loss Psychological counseling to cope with changes.

22. Summary Challenges to data collection & helping people with TBI get services TBI Awareness and identification Diagnosis Assessment Information Service Availability Access Funding