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Statewide Traumatic Brain Injury Surveillance Programs

(Source: http://www.cdc.gov/ncipc/res-opps/headinjy.htm)

 

 

Alaska

 

Program Description: The purposes of the system are to evaluate trauma patient care and to plan injury prevention programs. The Alaska Traumatic Brain Injury (TBI) Surveillance System provides timely and accurate population-based data on the incidence, cause and severity of all hospitalized and fatal non-hospitalized traumatic brain injuries in the state. The data are used to identify high-risk groups and activities, to follow trends in incidence, and to develop and evaluate injury prevention programs and policies.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: Currently not conducting SCI surveillance.

 

State Requirement for TBI/SCI Reporting: There is no state requirement mandating TBI or SCI case reporting.

 

Major Sources of Data: The major sources of data include the Alaska Trauma Registry and death certificates. In addition, information is obtained from medical records, the Alaska Department of Transportation and Public Facilities, the Alaska Department of Public Safety, the Alaska Division of Medical Assistance (Medicaid data), and health care providers likely to see persons with TBI. All hospitals in Alaska participate in the trauma registry system.

 

Last Year for Which Data are Available: 1997

 

Data Dissemination: The data are available to hospitals and ambulance services for quality of care review; to EMT instructors for training; to health officials for injury prevention planning and upon request.

 

Publication:
Traumatic Brain Injury in
Alaska. Response EMS Alaska 1998;21:6.

 

Referral of Surveillance Cases to Services: Surveillance data are not used to make referrals for services.

 

Contact Person:

Diane Sallee, M.S.
Community Health and Emergency Medical Services
Alaska Department of Health and Social Services
P.O. Box 110616
Juneau, AK 99811-0616

TEL: (907) 465-4170
FAX: (907) 465-4101
E-mail: dsallee@)health.state.ak.us



Arizona

 

Program Description: The purpose of Arizona’s TBI/SCI Surveillance Program is to provide population-based data for planning, implementation, and evaluation of prevention strategies and policy development. It has provided information for public education, grant responses and legislative review.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: There is no state requirement mandating TBI/SCI case reporting.

 

Major Sources of Data: The data are collected through the Arizona Hospital Discharge Database, which includes all non-federal Arizona hospitals; manual review of death certificates and all medical examiner reports; and review of medical records of a selected sample of hospitalized cases. Indian Health Services identifies hospitalized cases and provides requested data elements. Arizona residents who die out of state are identified through death certificate review. Approval has been received for future linkage of Arizona State Trauma Registry data with the TBI Surveillance System.

 

Last Year for Which Data Are Available: 1996

 

Data Dissemination: An annual report format has been developed. Data from 1992-1994 for both TBI and SCI were included in the most recent report dated July 31, 1997. Data are available upon request.

 

Publications:

  1. Annual Report: Traumatic Brain and Spinal Cord Injuries, Arizona, 1992-1994.
  2. Report: Traumatic Brain and Spinal cord Injury, Survivor’s Hospitalization Report, Arizona, 1992-1994.

 

Referral of Surveillance Cases to Services: Surveillance data are not used to make referrals for services.

Contact Person:

Ardis Decker
Arizona Department of Health Services
Bureau of Community and Family Health Services
1740 W. Adams
Phoenix, AZ 850 07
Program TEL: (602) 542-1245
TEL: (602) 542-1125
FAX: (602) 542-1265
E-mail: adecker@hs.state.az.us

 

 

Arkansas

 

Program Description (SCI): SCI surveillance is conducted as part of the Arkansas Spinal Cord Commission’s (ASCC) activities. The Arkansas Spinal Cord Commission (ASCC) assures that appropriate services are provided to Arkansas residents with spinal cord-related disabilities. The ASCC is responsible for maintaining a state spinal cord disability (including SCI) registry. New cases are assigned to case managers who provide information, referral counseling, advocacy, support and limited financial services for personal care services, equipment and home modification. The Commission is an independent state agency and receives funds from both public and private sources.

 

Program Description (TBI): The purpose of the traumatic brain injury surveillance program is

to determine the incidence, severity, and causes of traumatic brain injury in Arkansas, and to develop and target prevention programs to help reduce morbidity and mortality from brain injuries. The surveillance system is maintained by the Office of Disability Prevention.

 

Case Definition:

 

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: A case of spinal cord injury is defined as a state resident who has sustained an injury to the spinal cord and has three of the following: loss of motor function, loss of sensation, loss of bowel function, or loss of bladder function.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1975, requires reporting of new, potential SCI cases to the registry within 5 days of discovery by attending physicians, and public and private health and social service agencies. There are no state requirements mandating TBI case reporting.

 

Major Sources of Data:

 

Traumatic Brain Injury: The major sources of data come from the Hospital Discharge Data System (HDDS), death certificates, on-site review of selected sample of hospital medical records, Emergency Medical Services (EMS) and Trauma Systems records, and Arkansas State Highway and Transportation Department records.

Spinal Cord Injury: The major sources of data are reports from attending physicians and public and private health and social service agencies. Most reports are received from social workers in hospitals.

 

Last Year for Which Data Are Available: 1995 (TBI); 1997 (SCI).

 

Data Dissemination: There are eight different mechanisms available for the dissemination of these data: formal reports, data requests, the Internet, oral presentations, press releases, newsletters, and poster sessions and papers at state and national conferences. Data are also available upon request.

 

Publications:

  1. Vines, CL, Shackelford, M, Farley, T, McCluer, S, Myrick, RM, (1996). Identifying Secondary Conditions in Women with Spinal Cord Injuries, Little Rock, AR, author.
  2. Shackelford, M, Farley, T., Vines, CL, Identifying Psychosocial Characteristics in Adults with Spinal Cord Injury, SCI Process, Vol. 10, No. 2, pp 3 - 6, 1997
  3. Shackelford, M, Farley, T, Vines, CL, A Comparison of Women and Men With Spinal Cord Injury, Spinal Cord, (1998) 36, 337-339.

 

Referral of Surveillance Cases to Services: The Arkansas Spinal Cord Commission maintains a registry of all state residents with spinal cord disability (which includes injury) and provides lifelong case management services. Case managers are required by law to visit newly identified persons with SCI within 15 days of notification for assessment and to begin service delivery. The TBI surveillance data are not used to make referrals for services.

 

Contact Persons:

 


TBI:

Mary Gaither
Acting Director, Division of Chronic
Disease and Disability Prevention
4815 West Markham
Slot 41
Little Rock, AR 72205-3861
TEL: (501) 661-2227
FAX: (501)

 

SCI:

Cheryl Vines, M.S.
Arkansas Spinal Commission
1501 North University, Suite 470
Little Rock, AR 72207
TEL: (501) 296-1788
FAX: (501) 296-1787
Email: arkscc@aol.com


 

California

 

Program Description: The purpose of the California program is to develop population-based surveillance of TBI for the State of California. This system will be used to plan and evaluate public health interventions and policies which affect the incidence of TBI. The California Department of Health Services is focusing on developing a statewide TBI surveillance system. This system is based on hospital discharge files and unedited multiple cause of death files for the entire state.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition for SCI documented as a co-morbidity in TBI cases.

 

State Requirement for TBI/SCI Reporting: There is no state requirement mandating TBI/SCI case reporting.

 

Major Sources of Data: The major sources of data are a statewide hospital discharge data system and unedited multiple causes of death files.

 

Last Year for Which Data are Available: 1996

 

Data Dissemination: Data are disseminated through state reports and publications, and upon request.

 

Publications: None.

 

Referral of Surveillance Cases to Services: Surveillance system data are not used to make referrals for services.

 

Contact Person:

Roger Trent, Ph.D.
Chief, Injury Surveillance and Epidemiology Branch
Department of Health Services
601 N. 7th St., MS #271
P.O. Box 942732
Sacramento, CA 94234-7320
TEL: (916) 323-3642
FAX: (916)323-3682

 

 

Colorado

 

Program Description: Since 1991, Colorado has maintained a statewide, population-based surveillance system of all fatal and hospitalized traumatic brain injury. Surveillance data are used for targeting primary prevention and for identifying cases for follow-up in a project assessing outcomes associated with TBI.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: Currently not conducting SCI surveillance.

 

State Requirement: Legal authority to conduct injury surveillance is based on 1985 and 1991 state statutes authorizing the health department to "develop and maintain a system for detecting and monitoring environmental and chronic diseases within the state and to investigate and determine the epidemiology of those conditions which contribute to preventable or premature sickness and to death and disability" (C.R.S. 25-1-107(1)(dd)(I)(B). Thus, in 1991, the Colorado Board of Health made hospitalized head injuries a reportable condition (Regulation 1, List B).

 

Major Sources of Data: Cases are identified from the statewide hospital discharge system and death certificates. In addition to these sources, data on the circumstances of injury, severity, and initial outcome are abstracted from a sample of medical records.

 

Last Year for Which Data Are Available: 1997 (TBI); 1986-1996 (SCI)

 

Data Dissemination: A report on the general descriptive epidemiology of TBI for each year of surveillance data is distributed to local health departments, the Brain Injury Association of Colorado, the Office of Health and Rehabilitation in the State Department of Human Services, and to previous customers. Custom data requests are generated in response to public calls from local community groups, reporters, and students. The National Center for Injury Prevention and Control has disseminated multi-state data, including Colorado data, through the Morbidity and Mortality Weekly Report.

 

Publications:

  1. Gabella B, Hoffman RE, Marine W, Stallones L. Urban and rural traumatic brain injuries in Colorado. Annals of Epidemiol 1997; 7: 207-212.
  2. Gabella B, Reiner K, Hoffman R, et al. Relationship of helmet use and head injuries among motorcycle crash victims in El Paso County, Colorado, 1989-90. Accid Analysis & Prev, 27(3): 363-369, 1995.
  3. Johnson RL, Gabella BA, Gerhart KA, et al. Evaluating sources of traumatic spinal cord injury surveillance data in Colorado. Am J of Epidemiol 146(3): 266-72, 1997.

 

Referral of Surveillance Cases to Services: As part of the TBI follow-up project, participants who indicate the need for services are given contact information about services, or are referred to the Brain Injury Association of Colorado, which has developed a resource directory of services in the state.

 

Contact Persons:


Barbara Gabella, M.S.P.H.
Surveillance Director
Colorado Department of Public Health
EMSP-IE-A5
4300 Cherry Creek Dr., South
Denver, CO 80246-1530
TEL: (303) 692-3003
FAX: (303) 691-7720
Email: barbara.gabella@state.co.us

 

Richard Hoffman, M.D., M.P.H.
Chief Medical Officer & State Epidemiologist
Colorado Department of Public Health
OED-5000-A5
4300 Cherry Creek Drive, South
Denver, CO 80246-1530
TEL: (303) 692-2662
FAX: (303) 692-7702
Email: richard.hoffman@state.co.us


 

 

Louisiana

 

Program Description: The purpose of the registry is to identify all persons with spinal cord injury and traumatic brain injury for the purpose of targeting and evaluating prevention activities.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1985, requires the reporting of SCI cases. Legislation, passed in 1990, requires the reporting of TBI cases.

 

Major Sources of Data: Most reports are received from acute care and rehabilitation hospitals and through medical record reviews. Death certificates are also used.

 

Last Year for Which Data Are Available: 1996

 

Data Dissemination: Data is disseminated through CNS injury annual reports; articles in the bimonthly, Louisiana Morbidity Report; and articles in medical journals, such as the Journal of the Louisiana State Medical Society. Data are also available upon request.

 

Publications:

  1. Lawrence DL, Stewart GW, Christy DM, Gibbs, LI, Ouellette M. High School Football-Related Cervical Spinal Cord Injuries in Louisiana: the Athlete's Perspective. J LA State Med Soc 1997, 149(1):27-31
  2. Lawrence DL, Gibbs LI, Kohn MA. Spinal Cord Injuries Due to Deer Stands Falls, Louisiana 1985-1994. J LA State Med Soc, 1996, 148(2):77-79
  3. Gibbs LI, Lawrence DL, Reilley, BA. Bull Riding Related Brain and Spinal Cord Injuries, Louisiana 1994-95. MMWR 1996;45(37):796-798.

 

Referral of Surveillance Cases to Services: Surveillance system data are not used to make referrals for services.

 

Contact Persons:

 


Holly Flood, Program Manager
Injury Research & Prevention Section
Louisiana Office of Public Health
325 Loyola Avenue, Suite 315
New Orleans, LA 70112
TEL: (504) 568-2510
FAX: (504) 568-7312

 

Alicia Batchelder, M.P.H.
Project Epidemiologist
Injury Research & Prevention Section
Louisiana Office of Public Health
325 Loyola Avenue, Suite 315
New Orleans, LA 70112
TEL: (504) 568-8355
FAX: (504) 568-7312

Email: abatchel@dhhmail.dhh.state.la.us


 

 

Maryland

 

Program Description: The purposes of the TBI and SCI Surveillance Systems are to provide timely epidemiologic data on incidence-based traumatic brain and spinal cord injury within the state (statewide and county levels), and to disseminate this information for policy and prevention program planning and evaluation. Maryland’s TBI and SCI Surveillance Systems are components of a comprehensive statewide injury surveillance system. In addition, the State manages a mandatory hospital reporting system, the Disabled Individual’s Reporting System (DIRS), which receives discharge-based reports of acute TBI and SCI injuries.

 

Case Definition:

Traumatic Brain Injury: CDC case definition

Spinal Cord Injury: CDC/CSTE case definition

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1988, requires the reporting of SCI/TBI through the Disabled Individuals Reporting System (DIRS).

 

Major Sources of Data: Main sources of data are a statewide hospital discharge data system; the statewide Disabled Individual’s Reporting System (DIRS); and death certificates. DIRS is a reporting system by which all acute care hospitals in the state submit reports for individuals receiving hospitalization for TBI, SCI, amputation, and stroke. Other sources of data include case reports from the Office of the Chief Medical Examiner and supplementary information from cause-specific surveillance data systems (e.g. NHTSA-funded Crash Outcomes Data Evaluation System [CODES]).

 

Last Year for Which Data Are Available: 1997

 

Data Dissemination: Each of Maryland’s 24 political jurisdictions (counties and Baltimore City) receives annual TBI, SCI, and other injury-related epidemiologic profiles through their respective Injury Prevention Coordinators located in each local health department. Additional reports are distributed upon request (e.g., Governor’s Bicycle Advisory Committee, Brain Injury Association of Maryland, legislators, etc.).

 

Publications: None.

 

Referral of Surveillance Cases to Services: The DIRS system was established so that recently injured individuals could be advised of the various information, support, and service opportunities available throughout the State. As reports are received, an information and referral mailing is posted to each reported individual. This mailing describes services and contact points for a variety of assistance-oriented providers (e.g. vocational training, housing, assistive devices, etc.). Recipients contact providers directly or access more information via a central phone number.

 

Contact Person:

 

Erich M. Daub
Office of Injury and Disability Prevention
Maryland Department of Health and Mental Hygiene
201 W. Preston Street, Rm. 302
Baltimore, MD 21201
TEL: (410) 767-5780
FAX: (410) 333-7279
E-mail: daube@dhmh.state.md.us

 

 

Minnesota

 

Program Description: The purposes of the system are to identify gaps in services for persons who sustain a traumatic brain or spinal cord injury and their families, and to develop, implement, and evaluate prevention programs in communities across Minnesota.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1991, requires the reporting of TBI/SCI cases within 60 days of patient discharge.

 

Major Sources of Data: Data are obtained from a trauma registry data system, case reports from non-trauma registry hospitals, hospital discharge data, hospital medical records and death certificates.

 

Last Year for Which Data Are Available: 1997

 

Data Dissemination: Data are disseminated via published reports to hospitals, medical associations and specialty groups, community health agencies (the local public health system in Minnesota), other state agencies, and upon request. A yearly report is also produced.

 

Publication:

Traumatic Brain and Spinal Cord Injury Data Book, Volume 1: Incidence, mortality, and causes, Minnesota, 1993-1996. Injury and Violence Prevention Unit, Minnesota Department of Health, P.O. Box 9441, 717 Delaware St., SE, Minnesota, MN 55440-9441.

 

Referral of Surveillance Cases to Services: The Registry in Minnesota is designed to refer persons (and their families) to appropriate follow-up, rehabilitative and support services. Persons identified through the registry receive a letter with phone numbers and addresses for the Social Security Administration, Department of Human Services, Department of Economic Security (Division of Rehabilitation Services), the Brain Injury Association of Minnesota, and the Spinal Cord Injury Association and the Department of Children, Families and Learning (Minnesota's Department of Education).

 

Contact Person:

 

Mark Kinde, MPH
Injury and Violence Prevention Unit
Center for Health Promotion
Minnesota Department of Health
P.O. Box 64882
St. Paul, MN 55164-0882
TEL: (651) 281-9832
FAX: (651) 215-8959

 

 

Missouri

 

Program Description: The purposes of the registry are for assessing the incidence of severe head and spinal cord injuries and identifying high risk groups. The registry is designed to support (1) evaluation of trauma center systems and (2) epidemiological studies, and (3) provide information for developing injury prevention programs.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1986, requires the reporting of TBI and SCI.

 

Major Sources of Data: Acute care hospitals and inpatient rehabilitation facilities are required to report cases of TBI and SCI patients who are admitted, or who die in the emergency department or are transferred from the emergency department. Reports are sent to a central registry administered by the Missouri Department of Health. Data to supplement these records are added from inpatient PAS records (Patient Abstract System–a separate, more general, hospital reporting system) and from the mortality data system.

 

Last Year for Which Data Are Available: 1996

 

Data Dissemination: Data are disseminated via a standardized report published every two years and upon request.

 

Publications:

  1. Missouri Head and Spinal Injury Registry Report, 1994. Missouri Department of Health Biennial Report.
  2. Spinal cord injuries caused by penetrating trauma: 1988-1991. Missouri Vital Statistics, 1993; 26 (11).
  3. 1988 head and spinal cord injuries. Missouri Monthly Vital Statistics, 1989; 23(7).

 

Referral of Surveillance Cases to Services: Surveillance system data are not used to make referrals for services, but is used to locate counties that may need services or have clients that need services.

 

Contact Persons:

 

Mark Van Tuinen, Ph.D.
Chief, Bureau of Health Services Statistics
Missouri Department of Health
920 Wildwood Drive
P.O. Box 570
Jefferson City, MO 65102

TEL: (573) 751-6274
FAX: (573) 526-4102
Email: vantum@mail.health.state.mo.us

 

 

Nebraska

 

Program Description: Nebraska requires reporting of a broad range of conditions of the central nervous system, including TBI and SCI.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1992, requires the reporting of TBI/SCI.

 

Major Sources of Data: Physicians and psychologists are required to report cases of TBI and SCI to the state health department within 30 days after case identification. Each hospital in the state is required to report, within 30 days after a patient is discharged, any TBI or SCI that results in inpatient admission or outpatient treatment.

 

Last Year for Which Data Are Available: 1996

 

Data Dissemination: Data are used for an annual report and ad hoc reports. Data are also available upon request.

 

Publications: None.

 

Referral of Surveillance Cases to Services: Surveillance system data are not used to make referrals for services.

 

Contact Person:

 

Monica Seeland, RRA
Pat Fredrickson, RRA, Surveillance Coordinator
Nebraska Head & Spinal Cord Injury Registry
Division of Health Data Management
Nebraska Health & Human Services
Regulations & Licensure
301 Centennial Mall South
PO Box 95007
Lincoln, NE 68509-5007
TEL: (402) 471-0352 or (402) 471-0321
FAX: (402) 471-0180
Email: doh7145@vmhost.cdp.state.ne.us

 

 

New York

 

 

Program Description: The New York State Department of Health, Bureau of Injury Prevention, maintains an ongoing traumatic brain, spinal cord, and general injury surveillance system. The purpose of the surveillance system is to provide statewide and county-specific injury data in user-relevant formats to local, state and federal governments, and private and voluntary agencies. Primary data uses include epidemiological descriptions of the populations at risk and assisting in the development, implementation and evaluation of public health programs.

 

Case Definition:

Traumatic Brain Injury: CDC case definition

Spinal Cord Injury: CDC/CSTE case definition

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1979, requires all hospitals to report all discharges to the uniform hospital discharge data system. There are no specific state requirements mandating TBI or SCI case reporting.

 

Major Sources of Data: Hospitalization data are obtained from the statewide inpatient uniform hospital discharge data system, which has included E-codes since 1990. Death data are obtained from the multiple cause of death files.

 

Last Year for Which Data are Available: 1996

 

Data Dissemination: Data on TBI/SCI and other injuries are published in the Bureau of Injury Prevention’s ongoing injury surveillance document entitled "Injury Facts for New York State." "Injury Facts" is widely disseminated to public, private and individual health practitioners. In addition to more than 1,250 hard copies in circulation, the document is posted on the World Wide Web at the following address: http://www.health.state.ny.us/nysdoh/research/injury/injury.htm.

Data reports are also provided upon request and remain a popular mode for receiving customized information not routinely reported in our surveillance document.

 

Publications:

  1. Injury Facts for New York State, On-going publication, New York State Department of Health, Bureau of Injury Prevention. Initial printing 1994, last revision June 1999.
  2. Spotlighting Injury in New York State: Causes, Consequences, Countermeasures, New York State Department of Health, Bureau of Injury Prevention. Printed 1995.

 

Referral of Surveillance Cases to Services: Surveillance system data are not used to make referrals for services.

 

Contact Person:

 

Loretta A. Santilli, M.P.H.
Public Health Representative
E-mail: las09@health.state.ny.us

Kathleen K. Thoburn
Program Research Specialist
E-mail: kkt01@health.state.ny.us

New York State Department of Health
Bureau of Injury Prevention
Empire State Plaza
Corning Tower Building, Room 557
Albany, New York 12237-0677
TEL: (518) 473-1143
FAX: (518) 474-3067

 

 

Oklahoma

 

 

Program Description: The purpose of the statewide population-based surveillance system is to provide traumatic brain injury/spinal cord injury (TBI/SCI) data for the planning, implementation, and evaluation of prevention programs.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1991, and effective beginning January 1, 1992, requires the reporting of TBI and SCI.

 

Major Sources of Data: Approximately 100 data elements are collected on hospitalized and fatal cases through reviews of medical records and medical examiner reports. These data are supplemented by Department of Public Safety Traffic Collision Reports. Information is also collected from inpatient rehabilitation facilities.

 

Last Year for Which Data are Available: 1997

 

Data Dissemination: Annual reports on the epidemiology of TBI are prepared and distributed. Approximately every other month, a brief report, "Injury Update" on the epidemiology of a subset of cases is prepared (e.g. horseback riding-related TBI). In addition, reports are submitted to the state neurologic injury council and specific data analyses are generated on request.

 

Publications:

  1. CDC. Traumatic brain injury-Colorado, Missouri, Oklahoma, and Utah, 1990-1993. MMWR 1997;46:8.
  2. CDC. Horseback-riding-associated traumatic brain injuries-Oklahoma, 1992-1994. MMWR 1996;45:209.
  3. Price C, Makintubee S, Herndon W, Istre GR. Epidemiology of traumatic spinal cord injury and acute hospitalization and rehabilitation charges for spinal cord injuries in Oklahoma, 1988-1990. Am J Epidemiol 1994;139:37-47.

 

Referral of Surveillance Cases to Services: Surveillance system data are not used to make referrals for services.

 

Contact Persons:

 


TBI:

Pam Archer, MPH
Oklahoma State Department of Health
Injury Prevention Service
1000
NE Tenth Street
Oklahoma City, OK 73117-1299

TEL: (405) 271-3430
FAX: (405) 271-2799
Email: pama@health.state.ok.us

 

SCI:

Sheryll Shariat
Oklahoma State Department of Health
Injury Prevention Service
1000
NE Tenth Street
Oklahoma City, OK 73117-1299

TEL: (405) 271-3430
FAX: (405) 271-2799
Email: sherylls@health.state.ok.us


 

 

Rhode Island

 

Program Description: The system is part of more comprehensive injury surveillance and disability prevention efforts whose purposes are to design and implement injury prevention and secondary disability prevention programs in the Department of Health and the Disability and Health Program.

 

Case Definition:

Traumatic Brain Injury: A case is defined as a Rhode Island resident who is:

1) admitted to acute care or inpatient rehabilitation hospitals and discharged with any of CDC defined ICD-9-CM TBI diagnoses. [In addition, 905.0, 907.0 (late effects of TBI) and post-concussion syndrome (310.2) codes are reviewed for eligibility and case finding.]; and 2) any death with any of the above multiple cause of death codes (plus 873 and a gunshot wound.)

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1987, required the reporting of TBI discharges by hospitals to the Office of Vocational Rehabilitation. Amended legislation, in 1996, changed the reporting agency to the Department of Health and added reporting of SCI to the Central Registry of Traumatic Brain Injury.

 

Major Sources of Data: The main sources of data are hospital discharge data, death certificates, and TBI Registry reports submitted by hospitals to the TBI Registry. Medical Examiner files are available for review 1999 from a comprehensive database being established. SCI registry reporting will begin following final promulgation of rules and regulations.

 

Last Year for Which Data are Available: 1996 by Person/Event/Year, with 1997 in preparation. TBI Registry data for hospitalizations are available through the current month.

 

Data Dissemination: A brief report for each year is sent to legislators. A fuller, more analytical report will be prepared after preliminary data are considered final. A one page brief in "Health by Numbers" will reach physicians via the Rhode Island Medical Journal. Cross tabulations for aggregate data are also available upon request.

 

Publications: None.

 

Referral of Surveillance Cases to Services: TBI Registry entrants receive a mailing, informing the individual with TBI, or the family of a child, of services, including a mail-back for the Rhode Island Traumatic Brain Injury Resource Directory. This Directory was prepared in collaboration with the Brain Injury Association of Rhode Island, the Rhode Island Technical Assistance Project (which provides training for school personnel in TBI issues) and several other state organizations. The Disability and Health Program and the state Early Intervention Program are exploring ways to do outreach to parents of young children identified in the Registry. The surveillance system does not yet include mailings to persons with new SCIs, but a section has been added on SCI in the latest revision of the Resource Directory.

 

Contact Persons:

 


David Hamel, M.P.A.
Disability and Health Program
Rhode Island Department of Health
3 Capitol Hill, Room 302
Providence, RI 02908-5097
TEL: (401) 222-4632
FAX: (401) 222-3816 

 

Mary C. Speare, M.A.
David Hamel, M.P.A.
Disability and Health Program
Rhode Island Department of Health
3 Capitol Hill, Room 302
Providence, RI 02908-5097
TEL: (401) 222-5931
FAX: (401) 222-5957


 

 

South Carolina

 

Program Description: The purposes of the South Carolina surveillance systems are to define the magnitude of TBI, to detect clusters of events, to determine and monitor changes in underlying causes of injury, to target populations and etiologies for prevention programs, and to evaluate prevention programs. The system includes the South Carolina Traumatic Brain Injury Registry.

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1992, requires the reporting of TBI and SCI to the South Carolina Traumatic Head and Spinal Cord Injury Information System from all data sources. The South Carolina Department of Health and Environmental Control (DHEC) also has statutory power to obtain patient-related information in the state.

 

Major Sources of Data: The South Carolina TBI Surveillance System uses three different data sources to acquire information: the Statewide Emergency Department Visits Data System, the Statewide Hospital Discharge Data Set and the Multiple Causes of Death Data Set.

 

Last Year for Which Data are Available: 1997

 

Data Dissemination: The South Carolina TBI Surveillance System disseminates data through several mechanisms, including an annual report, the DHEC reportable disease and agency annual reports, and through presentations. In addition, the project maintains a web site for TBI activities with a hyperlink to partner agencies. The website is located at the following URL: http://www.state.sc.us/dhec/hsbrain.htm. Data are also available upon request.

 

Publications:

  1. The SC Traumatic Brain and Spinal Cord Injury Information System Annual Report, 1992-93.
  2. The SC Traumatic Brain Injury Annual Report, 1995-1997.
  3. Injury Surveillance Utilizing Statewide Emergency Department Data System, 1995-97.

 

Referral of Surveillance Cases to Services: The South Carolina TBI and SCI surveillance system provides information on TBI and SCI survivors to Department of Disability and Special Needs (DDSN). TBI survivors with AIS score of $3, or AIS score of 2 and discharge disposition indicating a need for rehabilitation measures, are referred to DDSN. All persons with SCI are referred to services. DDSN, with 26 case workers covering all 46 counties of the state, contacts these individuals to assess their needs and eligibility for services.

 

Contact Persons:

 


TBI:

Leroy Frazier, Jr. M.S.P.H.
SC Department of Health & Environmental Control (DHEC)
Mills/Jarrett Complex
Box 101106
Columbia, SC 29211-0106
TEL: (803) 898-0314
FAX: (803) 253-4001
E-mail:fraziel@columb61.dhec.state.sc.us

SCI:

Anbesaw Selassie, Dr.P.H.
Dept. of Biometry and Epidemiology
Medical University of South Carolina
135 Rutledge Avenue, Suite 1148
POBox 250551
Charleston, SC 29425
Phone (843)876-1140 
Fax (843)876-1126


 

 

Utah

 

Program Description: The purposes of the Utah surveillance system are to define incidence and etiologies of TBI/SCI, to identify risk factors, to develop prevention programs, and to provide information for service and advocacy organizations. Utah’s surveillance activity for SCI and TBI is located within the Violence and Injury Prevention Program (VIPP).

 

Case Definition:

Traumatic Brain Injury: CDC case definition.

Spinal Cord Injury: CDC/CSTE case definition.

 

State Requirement for TBI/SCI Reporting: Legislation, passed in 1989, requires the reporting of SCI. Legislation, passed in 1990, requires the reporting of TBI.

 

Major Sources of Data: The main sources of data are hospital discharge data. A random sample of all reported traumatic brain injury is selected and detailed information is abstracted from hospital medical records, medical examiner records, and rehabilitation records.

 

Last Year for Which Data are Available: 1996

 

Data Dissemination: Annual reports are completed for TBI and SCI. A report summarizing all years of available data has been distributed to other programs within the Utah Department of Health, local Utah Health Departments, the Highway Safety Office, community advocacy groups, and others interested in the prevention of traumatic brain injury. Data are also provided to universities, hospitals, physicians and others upon request. In addition, articles have been submitted for peer-reviewed publications.

 

Publication:

Thurman DJ, Jeppson L, Burnett CL, Beaudoin DE, Rheinberger MM, Sniezek, JE. Surveillance of traumatic brain injuries in Utah. The Western Journal of Medicine. 1996; 165(4): 192-196.

 

Referral of Surveillance Cases to Services: Surveillance system data are not used to make referrals to services.

 

Contact Person:

 

Erick Henry
Violence and Injury Prevention Program
Utah Department of Health
288 North 1460 W
P.O. Box 14420
Salt Lake City, UT 84114
TEL: (801) 538-6864
FAX: (801) 538-6510



Community Interventions for Disabilities Related to Spinal Cord Injury

 

Chicago Rehabilitation Institute

Project Description

Pressure ulcers are a frequent complication following spinal cord injury (SCI), one which is costly in terms of economic, health, and social-emotional quality of life. Recent changes in health care delivery that resulted in decreased lengths of hospitalization SCI may place these persons at even greater risk for pressure ulcers. Specific aims of this study are to test the efficacy of a multifaceted, behavioral protocol on : 1) pressure ulcer prevention, 2) costs of pressure ulcer prevention and treatment, and 3) skin care self-efficacy and quality of life. The study will consist of a randomized clinical trial with a total of 146 subjects in their first SCI hospitalization, who will be recruited from two sites. The protocol will be delivered during acute rehabilitation and postdischarge. The control group will receive usual care, including education and discharge planning. The experimental group will receive usual care plus interventions by a research nurse who will use behavioral methods to increase adherence to an individualized skin care regimen. Telephone contacts and home visits will continue for the first 4 months after discharge. Hypotheses will examine the effect of treatment condition on: 1)cost of pressure ulcers (rehospitalization charges, pressure ulcer care (supplies, family related costs, health services); 2) costs of pressure prevention (intervention costs, support equipment, and other resources), and 3) patient outcomes (number and severity of pressure ulcers, number of pressure ulcer-free days, number of lost activity days, adherence to skin care regimen, self-efficacy, and quality of life).

 

Contact Person:

 

Rosemarie B. King, Ph.D., R.N.
345 E. Superior Street, Rm. 961
Chicago, Illinois 60611
email: rbking@nwu.edu
Phone: 312/908-8038
Fax: 312/908-5925

 

 

Arkansas Spinal Cord Commission

 

Project Description

Approximately 2 million persons in the United States live with Spinal Cord Injury (SCI). Pressure ulcers are a frequent complication following spinal cord injury (SCI), one which is costly in terms of economic, health, and social-emotional quality of life. The incidence of pressure ulcers among persons with SCI is 30% annually. Recent changes in health care delivery that resulted in decreased lengths of hospitalization SCI may place these persons at even greater risk for pressure ulcers. One study showed the cost of hospitalizing a person with pressure ulcers was an average of $90,000. The purpose of this study is to develop a home-based program for pressure ulcer prevention among individuals with spinal cord injuries that addresses the medical, social and environmental factors associated with the development of pressure ulcers. Participants will be divided into an intervention group and a control group. Those in the intervention group will be assigned to a prevention educator (public health nurse) who will work with the participants to develop a prevention program. Participants will be will be screened at 6 months, 12 months, and 18 months. Results of the three screenings will be compared for each participant and between the two groups to identify any similarities and differences. Major findings will be summarized and disseminated to rehabilitation and other health care providers who serve individuals with spinal cord injuries to facilitate the development of pressure sore prevention strategies and interventions. Additionally, all materials used will be made available to interested parties, so effective methods will be applicable to populations outside of Arkansas.

 

Contact Person:

 

Cheryl Vines, M.S.
Arkansas Spinal Commission
1501 North University, Suite 470
Little Rock, AR 72207
TEL: (501) 296-1788
FAX: (501) 296-1787
Email: arkscc@aol.com


Traumatic Brain Injury Registry



The Colorado Department of Public Health and Environment was awarded a cooperative agreement to establish a TBI follow-up registry. Craig Hospital, through the Colorado Department of Public Health and Environment intends to enroll all surveillance-identified cases with severe TBI and a 20% random sample of less severe cases, follow them annually according to a standard protocol, and assess medical complications, functional limitations, community integration, life satisfaction, and service utilization. The Health Department will work with
Craig Hospital investigators, who have extensive field experience. Investigators also propose cross-sectional follow-up of survivors tracked by a TBI surveillance program since 1991 and cases from an earlier pilot TBI study. Data will be validated via medical record abstraction and family member interview. Objectives and activities proposed for the first year are: (1) to plan and oversee the transition from TBI surveillance to registry enrollment using a local expert advisory panel (meeting weekly); (1a) to assess the completeness of current reporting; (1b) to survey rehabilitation facilities to assess data coding practices; (2) to develop registry enrollment from all persons diagnosed in 1995 with severe TBI, and a 20% sample of those less than severe for an estimated 1,200 cases in the final sample; (2a) to review hospital records for all cases to abstract variables not collected through routine surveillance (especially personal identifiers); (3) to develop and finalize a data collection instrument; (4) to conduct annual telephone interviews to ascertain medical complications, functional limitations, community integration, life satisfaction, and service utilization; (5) to conduct a validation study on a 20% sample (240 cases) using proxy interviews and review of medical records. (6) to establish a research data base by retrospective follow-up of an additional 2,300 cases identified (dating as far back as 1989); (7) to define the natural history of secondary conditions associated with TBI by analyzing data collected; (8) to utilize data collected to improve care and outcomes of persons with TBI; (9) to analyze registry data to identify outcome predictors and the most useful data elements and to design intervention projects; and finally (10) to evaluate the cost-effectiveness of the Colorado registry and to develop specific recommendations for an
exportable registry model.


Official Oregon definition of "Traumatic brain injury" means an acquired injury to the brain caused by an external physical force resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child's educational performance. The term includes open or closed head injuries resulting in impairments in one or more areas, including cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual and motor abilities; psychosocial behavior; physical functions; information processing; and speech. The term does not include brain injuries that are congenital or degenerative, or brain injuries induced by birth trauma.  (OAR 581-15-005)

 

NOTE:  "Children with disabilities" means those school age children who are entitled to a free appropriate public education as specified by ORS 339.115 and who require special education because they have been evaluated as having one of the following conditions as defined by rules established by the State Board of Education: Mental retardation, hearing impairment including difficulty in hearing and deafness, speech or language impairment, visual impairment, including blindness, deaf-blindness, emotional disturbance, orthopedic or other health impairment, autism, traumatic brain injury or specific learning disabilities."  (ORS 343.035(1))

 

Used to determine eligibility for special education services in public schools.

 

Oregon State Health Service epidemiologists use the CDC definitions based on ICD-9-CM codes for hospitalizations and ICD-10 codes for fatalities.  The codes used to define TBI hospitalizations are N Codes 800.0-801.9, 803.0-804.9, 850.0-854.1, 959.01.  The codes used to define fatal TBI are S01.0-01.9, S02.0-02.1,S02.3, S02.7-02.9, S06.0-S06.9, S07.0, S07.1, S07.8, S07.9, S09.7-S09.9, T01.0, T02.0, T04.0, T06.0, T90.1, T90.2, T90.4, T90.5, T90.8, T90.9.