1. CDC Traumatic Brain Injury Activities
Angela Marr, MPH
May 13, 2004
National Center for Injury Prevention and Control
Centers for Disease Control and Prevention

2. CDC Mission
To promote health and quality of life by preventing and controlling disease, injury, and disability.
TBI is a leading cause of death and disability in the US. It fits within the CDC mission for TBI-related activities to be a focus for the Injury Prevention Center.

3. Traumatic Brain Injury (TBI) is:
A blow or jolt to the head resulting in disruption of the normal function of the brain.
A blow or jolt to the head can result in a traumatic brain injury (TBI), which can disrupt the normal function of the brain. The severity of the injury may range from mild, a brief change in mental status or consciousness, to severe, an extended period of unconsciousness (30 minutes or more), prolonged amnesia after the injury, or a penetrating skull injury. Any TBI can result in short- and long-term disabilities (CDC unpublished). 

4. TBI Problem Impact and Magnitude of TBI in the United States:
1.5 million people sustain a TBI annually
At least 5.3 million people live with disabilities resulting from TBI
However this number is likely an underestimate because it includes only persons hospitalized with TBI and not those seen only in the ED or who did not receive care for their injury. Population-based data on TBI in the US are critical to an increased understanding of the impact of TBI on public health.

5. Background TBI Act of 1996 The Children’s Health Act of 2000
CDC receives $ 4 million for TBI
Among other responsibilities, CDC assigned to:
Collect and disseminate information on incidence of TBI and prevalence of TBI-related disability
Develop an education and awareness campaign
Congressional funding for CDC’s traumatic brain injury activities began with the TBI Act of 1996.  Since then, CDC has supported data collection and follow-up studies in more than 15 states to track and monitor TBI, to link people with TBI to information about services, and to find ways to prevent TBI-related disabilities. 

6. Background CDC’s unique role in TBI
Provides population-based information about the importance of TBI as a public health problem at the national and state level.

7. Overview of TBI Activities
Analysis of national TBI data
State programs
Injury Core Capacity Building
Injury indicators report
TBI surveillance
TBI follow-up
TBI linkage projects
Education and awareness
TBI surveillance in 12 states
Injury Core Capacity Building in 28 states
Injury indicators report in 26 states
TBI follow-up registry of older adolescents and adults in SC
TBI linkage projects in and CO
State Programs or CDC sponsored state activities.

8. Analysis of National TBI Data
The following information was taken from the soon to be released CDC monograph focusing on TBI in the US between

9. National Data Analysis
Critical to understanding the impact of TBI on public health
Provides a comparison point for states
Provides useful information for legislators and policy makers
Population based data on TBI in the US are critical to an increased understanding of the impact of TBI on public health
National data provides a comparison for states
Provides useful information for legislators and policy makers

10. Data Sources
The National Hospital Ambulatory Medical Care Survey (NHAMCS)
The National Hospital Discharge Survey (NHDS)
The Multiple Cause of Death data (MCOD)
Data for the soon to be released monograph were obtained from the National Center for Health Care Statistics.
Specific data sources include:
The National Hospital Ambulatory Medical Care Survey (NHAMCS) for data estimating TBI-related ED visits
The National Hospital Discharge Survey (NHDS) for data estimating TBI-related hospitalizations
The Multiple Cause of Death data set for data on TBI-related deaths
The 3 data sources were combined to provide an estimate of the overall impact of TBI on the nation.
Presents average annual numbers and rates

11. Overview of TBI in the United States
??? Visiting Private Doctor or
Receiving no Medical Care
1,000,000
Emergency Department Visits
230,000
Hospitalizations
53,000
Deaths
During the years , an average of 1.36 million TBIs occurred in the US annually. Of these, the vast majority (79%) were ED visits, followed by hospitalizations (17%) and deaths (4%).
Although more complete than previous reports, the information presented here still underestimates the occurrence of TBI in the US. Persons treated for TBI in doctors’ offices and those who do not receive any care for TBI are not included.
Source: MCOD ( ) , NHDS ( ) , NHAMCS ( )

12. Average Annual Rates of TBI-related Deaths, Hospitalizations, and ED Visits, by Age, United States,
Very young children aged 0-4 years had the highest rate of TBI-related ED visits, followed by adolescents aged years and adults aged 75 years and older.
However, the highest rates of TBI hospitalization & death occurred among those aged 75 years and older.
Summary
Children, older adolescents, and persons aged 75 years and older are more likely than others to sustain a TBI.
Source: MCOD ( ) , NHDS ( ) , NHAMCS ( )

13. State Programs
The goal of this presentation is to present the broad spectrum of CDC TBI-related activities. I started by presenting information on analysis of national data sets and now I would like to some of our state activities.

14. State Programs Injury core capacity Injury indicators report
TBI surveillance
TBI follow-up
TBI service linkage projects
General to specific

15. Core State Injury Programs
Core State Injury Programs were designed to build injury prevention and control capacity at the state level.
Allows states to tailor to their state’s injury problems.
States have better access
to communities and
local organizations.
About the Core State Injury Program
Injury is a leading killer in all 50 states, but injury problems differ among the states. Because of variations in geography, weather conditions, and population groups, some states have injury issues not experienced by the rest of the country. To address these issues, CDC funds state health departments to enhance the core public health infrastructure by improving their capacity to prevent injuries and resulting deaths and disabilities. 
State health departments can reach local communities easier and more efficiently than federal agencies can. Building and strengthening coordinated state programs to prevent injury ensures that federal funding for injury prevention moves quickly to those who need it most. 

16. Core State Injury Activities
Establish a focal point for injury prevention activities
Form injury advisory councils
Use data
Conduct resource assessment
Develop state injury plan
This CDC funding helps states to develop the five core components of model state injury programs:
Collecting and analyzing data 
Providing technical support and training to communities conducting injury programs
Coordinating and collaborating in injury prevention activities
Designing, implementing, and evaluating programs to prevent injury
Informing public policy that supports injury prevention

17. Core Data Sources VR - Vital Records HDD - Hospital Discharge Data
FARS - Fatality Analysis Reporting System
ED Emergency Department
ME Medical Examiner/Coroner Data
CDR - Child Death Review Team Data
UCR Uniform Crime Reporting System
EMS - Emergency Medical Services Data
OPU - National Occupational Protection Use Survey Data
BRFSS/YRBSS - Behavioral/Youth Risk Surveillance System
14 Injuries and Injury Risk Factors
Motor Vehicle Injuries
Alcohol in MV Deaths
Self Reported Seat Belt/Safety Use
Homicide
Suicide/Suicide Attempt
Firearm Injuries
Traumatic Brain Injuries
Traumatic Spinal Cord Injuries
Fall Injuries
Fire and Burn Injuries
Smoke Alarm Use
Submersion Injuries
Poisoning

18. Core Injury Capacity States
Core State
Currently, there are 28 states that have one or more core state funded programs. The states shaded in pink above are funded.
For more information on the Core Injury Capacity Building Program or for information on a particular state, please visit the Core Injury website.

19. Injury Indicators Report
CDC provides guidance to states to analyze their own injury data of which TBI is an indicator
Includes:
1999 data (2nd Edition)
26 states chose to participate
We are preparing to send out guidance for version 3 of the state injury indicators report.

20. State Injury Indicators Report
Goal
Improve state-based injury surveillance to better support injury prevention programs and policies.
In September 2000, CDC’s National Center for Injury Prevention and Control agreed to coordinate the production of a surveillance report on injuries with state health departments. This unique partnership teams CDC with state health departments, STIPDA and CSTE to produce the State Injury Indicators Report.

21. State Injury Indicators Report
States
Participate in the dialogue and add knowledge
Calculate and submit data in a standardized way
Use data to affect state and local public health
CDC/NCIPC
Disseminates instructions for indicator calculation
Coordinates data submission
Writes text sections
Prepares and distributes the document
Under this partnership, CDC is responsible for facilitating the process of the report’s preparation. This includes disseminating instructions for indicator calculation, coordinating data submission from the participating states, writing the text sections, and preparing and distributing the document.
Participation by state health departments in this partnership is voluntary. By volunteering, state health departments participate in the dialog and add knowledge to the process of injury surveillance. In addition, participating states also calculate and submit data in a standardized way to CDC.

22. State Injury Indicators Report, Version 2
Delaware
26 states participating
Successes
States are participating voluntarily
Fosters ongoing dialogue with STIPDA and CSTE
Facilitates technical assistance to states
Builds state capacity for annual injury data analysis

23. TBI Multi-state Surveillance
Maintain TBI surveillance in 12 states
All 12 collect basic data
6 also abstract medical records
2 conduct ED surveillance

24. Surveillance is:
The systematic and ongoing collection of data

25. Types of Data Collected
Demographic
Cause of injury
Severity and early outcome data
Additional circumstances of injury information

26. Data Sources Hospitalizations Deaths Multiple Cause of Death
Hospital Discharge Data
Trauma Registry Data
TBI Registries
Medical Records
Deaths
Multiple Cause of Death
Edited
Unedited

27. TBI Multi-state Surveillance Product
Linked hospitalization and death data
Estimate incidence of TBI
Describe the population at risk
Identify causes of injury
Inform policy development

28. TBI Surveillance Programs
TBI Surveillance State
Extended TBI
ED Surveillance

29. Examples of the Multi-state TBI Surveillance Results

30. Age-adjusted TBI-related hospital discharge rates, by state
The age-adjusted TBI-related hospital discharge rate for the 14 states combined was 69.7/100,000 population.
The age adjusted rate varied widely by state and was highest for Maryland and lowest for Rhode Island.
Factors contributing to these differences might include differences among states in 1) the actual rate of TBI occurrence 2) hospital admission practices, 3)the number of diagnosis codes that can be reported in the HDD sets, and 4) other TBI reporting and coding practices. The relative contributions of these factors have not yet been determined.
MMWR Langlois, et al

31. TBI-related hospital discharge rates, by age and sex -- 14 states
At all ages, TBI-related hospital discharge rates were higher for males than females. The overall age-adjusted rate for males was nearly twice that of females. For both sexes rates were highest for the age-groups years and >= 65.
MMWR Langlois, et al

32. TBI-related hospital discharge rates, by age and race – 12 states,*
Overall, age-adjusted rates were highest for American Indians/Alaska Natives and blacks, but substantial variation by age occurred. For the age groups years through years, American Indians/Alaskan Natives had the highest TBI-related hospital discharge rates. Within the age group 0-4 years, blacks had the highest rate, and within the age group >= 65 years , whites had the highest rate. For whites, blacks, and Asians/Pacific Islanders, the rate for persons aged >=65 years was substantially higher than for persons aged years. However, for American Indians and Alaska Natives, the rate for persons aged >= 65 years was substantially lower than for the other adult age groups.
Rates are for 12 states with adequate reporting of race
(AK, AZ, CA, CO, LA, MD, MO, NE, NY, OK, RI, SC)
MMWR Langlois, et al

33. TBI Follow-up Study
CDC funded CO and SC to develop methods for tracking and interviewing people with TBI yearly to find out what happens to them after they leave the hospital
SC is currently interviewing a sample of people with TBI aged 15 years or older each year
The initial results of these projects indicate that a substantial portion of people hospitalized with TBI have residual deficits and service needs one year after injury.
A limitation of the current studies is the focus on older adolescents and adults. To truly understand the needs of children the study will need to be expanded to include this special population.
CO study is completed – South Carolina study is ongoing

34. CO TBI Follow-up Results
60% Reported One or More Needs Most Frequent Included:
Improving memory, solving problems better
Managing stress and emotional upsets
Managing money and paying bills
Traveling in the community

35. CO TBI Follow-up Results
Needs Least Likely to be Met
Finding paid employment
Improving job skills
Improving memory, solving problems better
Controlling alcohol and / or drug use

36. TBI Linkage to Services
The 800 number project in Colorado:
Collaboration between CSU,
CDPHE, BIAC, HRSA, and CDC
Showed sending people with TBI a letter about an 800 number for services increased the use of the number 4 to 6 fold
Linking people with TBI to information about TBI services In FY 2001, CDPHE received funds to evaluate the effectiveness of linking people in the statewide TBI surveillance system to information about TBI services. Colorado selected a random sample of 750 persons in its existing TBI surveillance system and sent them letters about a toll-free hotline to help them find TBI services. Call volume to the hotline quadrupled during the months the letter was sent out. This result indicates that people with TBI want services but may not know about them or how to access them. Callers from rural settings were overrepresented among the people who called the hotline, which may indicate that resources for TBI services are more limited for persons living in rural communities than for persons in urban settings. 

37. Education and Awareness
Concussion brochure (English & Spanish version)
Physician toolkit for educating about “mild” TBI
Developing toolkit for high school athletic coaches

38. CDC TBI Resources Web Page

39. How do CDC TBI Programs Relate to Services?
Perhaps states could build “registries” by
enhancing their surveillance systems to help people
- find out about service needs
- link to services

40. Building TBI “Registries”
Linking to services 3 3
Identifying
(Personal identifiers and contact info) 2 2
Surveillance 1 1

41. Building on Surveillance to Link People to Services
Surveillance data meet the needs of state service agencies for data on the numbers of people with TBI who may need services
Legal authority to identify and contact people with TBI included in surveillance allows states to link them to available services

42. Possible CDC Future TBI Activities
Identify people with TBI in institutions
Expand follow-up studies and include children
Expand education and awareness efforts

43. Possible CDC Future TBI Activities
“Mild” TBI Initiative
Research on how the public interprets the term “mild” TBI
Validate case definitions for “mild” TBI
Study of the prevalence of disability after “mild” TBI

44. Contact Information
Angela Marr, MPH
CDC/NCIPC
Phone:
(770)