Purpose of this Report
On October 26 and 27, 2000, the Centers for Disease Control and Prevention (CDC) convened an expert working group to discuss "Methodological Issues in Assessing Outcomes of Traumatic Brain Injury in Children and Adolescents." This report documents the comments and suggestions of the working group.

Meeting Goal and Objectives
The goal of the meeting was to determine the feasibility and appropriate methods for conducting a population-based follow-up study of outcomes of TBI in children and youth.
The meeting objectives were to

• Identify key domains and variables to measure in assessing longer-term outcomes of TBI in children and youth (ages 0-16 years).

• Discuss the advantages and shortcomings of available measures for assessing these outcomes.

• Highlight the need for other types of research on TBI in children and youth.

• Discuss methodological issues in assessing TBI outcomes in this population.

Meeting Participants and Process
The eleven participants included researchers, advocates, psychologists, educators and other professionals from the United States and New Zealand. With input from the Brain Injury Association, CDC selected invitees for their potential to contribute to a greater understanding of the important outcomes of TBI in children that need to be studied or the methods appropriate for collecting information about those outcomes. Two of the participants are the developers of key measures of health status in children.

For each objective, CDC staff prepared background materials for discussion; selected meeting participants assisted in these preparations. The meeting began with presentations of preliminary CDC multi-state surveillance data and South Carolina surveillance data to provide background information on the importance of TBI among children and youth as a public health problem (See Appendix B and Appendix C). For the remainder of the first day, participants discussed the background materials. A professional note taker recorded participants’ comments and suggestions. On the second day, the moderator presented a synthesis of the suggestions for review and revision by the participants.

This report documents the final summary of the comments and recommendations. For some sections, more detailed definitions, references and other materials have been added to clarify the information from the meeting.

TBI as a Public Health Problem in Young People
Among children and youth aged 0 to 14 years in the U.S.:
Each year traumatic brain injury results in an estimated

• 3,000 deaths
• 29,000 hospitalizations
• 400,000 emergency department visits.*

Unintentional injury is the leading cause of death, and traumatic brain injury is the type of injury most often associated with death.
The annual total of TBI-related deaths is

• More than 6 times the number the number of deaths related to HIV/AIDS*
• 20 times the number of deaths from asthma**
• 38 times the number of deaths from cystic fibrosis.***

* CDC
** NCHS, Monthly Vital Statistics Report. Vol. 45, No. 3 (S), September 30, 1996.)
*** CDC Wonder

TBI is reported to be the leading cause of disability in young people in the U.S., but the evidence is limited. Most studies of the outcomes of TBI in children and youth are based on case series from selected hospitals or rehabilitation facilities, small regional samples or anecdotal reports. Few studies have followed the same group of children over time. (See Appendix B for additional statistics on TBI in children and youth.)

The Need for More Research
Population-based longitudinal studies provide data representative of the long-term outcomes of all children and youth in a defined area who have had a TBI. They are necessary to allow generalization to the U.S. population of children and youth with TBI. Currently no population-based studies of the outcomes of TBI among children and youth exist to provide national estimates of TBI-related disability and to document the need for services.

CDC has funded such studies, referred to as "follow-up studies" or "outcomes surveillance," of older adolescents and adults (ages 15 years and older) in two states, South Carolina and Colorado. In each of these studies, a sample of people hospitalized with a TBI is identified and given a telephone questionnaire at yearly intervals to find out about TBI outcomes, including disability. For more information about CDC-funded TBI studies, see Appendix E. When the first of these studies was initiated in 1994, children were not included, in part, because few measures were available. The difficulty of measuring the effects of the injury in the context of naturally occurring developmental changes contributes to the challenge of assessing outcomes of TBI in young people.

The Brain Injury Association, the Federal Advisory Committee for Injury Prevention and Control and a wide range of researchers and other professionals in the field have long argued for a population-based follow-up study of outcomes of TBI in children. In its October 2000 reauthorization of the TBI Act of 1996, Congress emphasized the need for CDC to support TBI studies among all age groups. This meeting was conducted to obtain advice regarding the feasibility of conducting a CDC-funded study of TBI outcomes in children and youth.

A Note about Terminology
Child vs. Pediatric: Meeting participants advocated using the term child because pediatric is associated with the medical model. Reference to child encourages consideration of broader, longer-term issues, not only medical concerns. Researchers and professionals should avoid using pediatric especially when referring to longer-term outcomes of TBI in children.

Youth vs. Adolescent: Participants referred to the term youth over teenagers or adolescents because it is more widely used in educational and other settings.

Caregiver vs. Parent: The term caregiver may be more appropriate than parent because in many cases the person caring for the child is someone other than a parent.

This page last modified on September 19, 2006

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