REPORT TO CONGRESS 

The Management 

of Traumatic Brain 

Injury in Children: 

Opportunities for Action 
2 REPORT TO CONGRESS

SUBMITTED BY

Centers for Disease Control and Prevention 

National Center for Injury Prevention and Control 

Division of Unintentional Injury Prevention 

ANNE SCHUCHAT, MD 

Rear Admiral, U.S. Public Health Service 

Acting Director, Centers for Disease Control and Prevention 

DEBRA HOURY, MD, MPH 

Director, National Center for Injury Prevention and Control 

GRANT BALDWIN, PHD, MPH 

Director, Division of Unintentional Injury Prevention 

The Report to Congress on the Management of Traumatic Brain Injury in Children is a publication of the Centers for Disease Control and Prevention (CDC), 

in collaboration with the National Institutes of Health (NIH). 

The inclusion of individuals, programs, or organizations in this report does not constitute endorsement by the Federal government of the United States, 

or the Department of Health and Human Services (DHHS). 

Suggested Citation: Centers for Disease Control and Prevention. (2018). Report to Congress: The Management of Traumatic Brain Injury in Children, 

National Center for Injury Prevention and Control; Division of Unintentional Injury Prevention. Atlanta, GA. 
THE MANAGEMENT OF TBI IN CHILDREN

CONTENTS

Executive Summary 4
 

Introduction 4
 

Public Health Burden 5
 

Outcomes of TBI in Children 6
 

Factors Influencing Outcomes 6
 

Current Service Delivery Systems 7
 

Identifying Gaps and Improving the Management of TBI in Children 8
 

Opportunities for Action 11
 

Conclusion 14
 

Background 

Section I: The Public Health Burden
 

of Traumatic Brain Injury in Children 18
 

Injury Severity 

18
 

19
 

Mechanism of Injury 

The Effects of TBI in Children
 

19
 

Incidence 

20 

Prevalence of Disability 21
 

Economic Impact 21
 

Section II: Outcomes and Consequences of TBI in Children 22
 

The Effects of TBI on the Developing Brain 23
 

Medical and Health Outcomes 23
 

Cognitive, Behavioral, and Social Effects of TBI 28
 

Factors That Influence Outcomes 32
 

Section III: Models of Service Delivery, Availability,
 

and Access for Children: Current State of Care 35
 

Medical Management 35
 

Moderate-to-Severe TBI 39
 

Health Disparities in TBI Care 40
 

School Management: Return to Learn 41
 

Return to Play and Recreational Activity 45
 

State-Based Services Available to Children with a TBI 48
 

Section IV: Addressing the Gaps: Opportunities for Action
 

to Improve the Care of Children with TBI 51
 

Acute Medical Management 52
 

Long-Term Medical Management 53
 

Family Support and Training 56
 

Return to School 59
 

Return to Activity and Independence 62
 

TBI Care During the Transition to Adulthood 65
 

Professional Training for TBI in Children 67
 

Building Research to Guide TBI Management in Children 70
 

Conclusion 72
 

References 

Appendix 86
 

3 

15 

74 
REPORT TO CONGRESS

EXECUTIVE SUMMARY

INTRODUCTION
 

Among all age groups, 

young children have one 

of the highest rates of 

Traumatic Brain Injury 

(TBI) related emergency 

department (ED) visits.1

TBI affects children differently than adults. An injury of 

any severity to the developing brain can disrupt a child’s 

developmental trajectory and may result in restrictions 

in school and participation in activities (e.g., sports). 

As a result of TBI, children can experience changes in 

their health, thinking, and behavior that affect learning, 

self-regulation, and social participation, all of which are 

important in becoming productive adults. Although most 

children recover well physically, they often experience 

changes in behavior and cognition that are not recognized 

immediately. Some of these post-TBI health problems 

emerge over time and are associated with significant 

financial and social challenges for adults having 

sustained a TBI as a child. Unlike other developmental 

health conditions in children that are diagnosed at birth, 

TBI is an acquired condition that can occur anytime 

during childhood with potential for a sudden alteration in 

development. The management of TBI in children is complex 

and depends upon multiple service delivery systems that 

frequently do not provide systematic or coordinated care 

to ensure an optimal recovery.2 However, due to the lack of 

robust scientific evidence identifying optimal pathways to 

recovery, current management is too often based on clinical 

practice experience rather than research. 

This report describes the public health burden of TBI 

in children and adolescents, including the range of

outcomes that may be experienced following a TBI. In 

addition, the report lays out the current systems involved 

in the management of children with TBI, identifies 

gaps that exist, and outlines some practices that hold 

promise in addressing those gaps. Finally, opportunities 

for action are offered that suggest ways to improve TBI 

care in children, and how we might advance our 

understanding of TBI care in the future. 

4 
THE MANAGEMENT OF TBI IN CHILDREN

PUBLIC HEALTH BURDEN 

Traumatic brain injury in children represents a significant public health burden in the 

United States. A traumatic brain injury disrupts the normal function of the brain, and can 

be caused by a bump, blow, or jolt to the head, or a penetrating head injury.3

by or against an object, whereas for 

those 15-24 years of age, the leading causes were motor vehicle crashes and falls.1

Another common cause of TBI is sports and recreational activities which accounted for 

an estimated 325,000 TBI-related ED visits among children and teens in 2012.4

TBI severity is typically separated into categories of mild, moderate, and severe based 

on a patient’s initial clinical presentation. Mild TBI (mTBI) 

In 2013, there were approximately 640,000 TBI-related emergency department 

(ED) visits, 18,000 TBI-related 

hospitalizations, and 1,500 TBIrelated deaths among children 14 

years of age, and younger.1 The 

leading causes of TBI-related ED 

visits, hospitalizations, and deaths 

for those 0-14 years of age were 

unintentional falls and being struck 

640,000 

EMERGENCY 

DEPARTMENT VISITS 

18,000 

HOSPITAL 

STAYS 

accounts for most (70-90%) TBI-related ED visits.5,6 Although 

most TBIs are considered mild, TBI also accounts for a large 

portion of unintentional injuries that lead to severe disability 

and death in youth under age 19. Children with severe 

TBI are more likely to be hospitalized and have a lifelong 

disability compared to children who have a mild injury. 

Although most people think of TBI as an acute condition, 

the effects of TBI can be chronic and disabling. It is 

unclear how many children currently live with a TBI-related 

disability, largely because childhood disability is not defined 

61% 

More than 61% 

of children with 

moderate-to-severe 

TBI experience a 

disability. 

consistently. One study, which defined disability as the use of specialized medical and 

educational services, found that more than 62% of children with moderate-to-severe 

TBI experienced disability, compared to 14% of children with mTBI.7

5 
REPORT TO CONGRESS

OUTCOMES OF TBI 

IN CHILDREN 

A TBI of any severity experienced by a child can result in 

changes that affect a child’s daily life.8-11 Symptoms of mTBI 

can include headaches and dizziness, as well as problems 

with thinking, memory, physical activities, emotions and 

moods, and sleep.12-20 Longitudinal studies suggest that most 

children with mTBI recover from the initial symptoms within 

6 weeks after injury, with approximately 60% having persistent 

symptoms at one month post-injury, 10% at three months 

post-injury, and less than 5% at one year post-injury.13,14,21-23

More severe brain injuries carry a range of medical, health, 

cognitive, motor, emotional, and behavioral issues. The 

significance of problems might not be realized until years 

after the injury when higher-level cognitive and behavioral 

functioning is required to meet typical developmental 

milestones, especially when the injury occurs at a very young 

age.24-28 Because of this, there is a critical need for follow-up 

care beyond the acute injury. 

School and post-school outcomes 

A child’s daily life centers on school, social participation, and 

extracurricular activities. A TBI of any severity can negatively 

affect a child’s future ability to learn and perform in school.29

Children with moderate-to-severe TBI earn worse grades, show 

higher rates of grade retention, and receive more special 

education services than their uninjured peers.30-33 Students 

with mild injury typically recover within a few weeks, and 

most of them return to their pre-injury classrooms. However, 

in a large study following children younger than 18 years 

of age, 14% of children who experienced an mTBI needed 

educational support services at school 12 months later.7

We know very little about the long-term adult outcomes of 

TBI in children. Most longitudinal studies of children with 

moderate-to-severe TBI have examined outcomes in children for 

intervals that are too short to understand how TBI impacts adult 

outcomes.19,29,34-36 A growing body of research indicates that for 

many students with moderate-to-severe TBI, post-high school 

career outcomes are poor.37-40 One study found that fewer than 

half of students with TBI who had been out of school a year 

or more had a paying job outside the home.41 Students with 

TBI also showed lower rates of enrollment in postsecondary 

education and independent living than those with most other 

disabilities.41 To date, there are no longer-term studies on 

children with milder injuries, or those who sustain multiple 

concussions across childhood. 

We have limited understanding of how childhood TBI 

impacts attainment of adult milestones (e.g., high 

school graduation, employment, or enrollment in postsecondary education). Studies of adults who sustained 

a childhood brain injury suggest common pathways 

to social difficulties, such as lower educational 

attainment and incarceration. 

FACTORS INFLUENCING 

OUTCOMES 

In addition to injury severity and the type of care a patient 

receives following injury, many factors can influence recovery 

from childhood TBI. Individual patient characteristics, such 

as age and pre-injury functioning, can play a big role in a 

child’s recovery. Co-occurring health and developmental 

conditions, such as a mental health diagnosis and AttentionDeficit/Hyperactivity Disorder (ADHD), can influence a child’s 

outcomes after TBI; however, there is limited evidence 

connecting medical conditions to achievement of longerterm milestones in children who have sustained a TBI.42

Socioeconomic status and family functioning also influence 

recovery.43-47 In any family environment, a TBI is an unexpected 

event that can create significant changes in family economic 

status and structure. Family-level factors are critical socialenvironmental influences on outcomes in children following a 

TBI.48 Economic and social disadvantage are associated with 

poor cognitive and academic outcomes following a severe 

TBI.45,49 Regardless of injury severity, many parents recognize 

differences in their child compared to their pre-injury status, 

which creates worry and concern for their future, especially as 

they approach adulthood.50 Parent/caregiver burden and family 

dysfunction are a particularly important consideration because 

they are a strong determinant of a child’s recovery, with 

children from well-functioning families demonstrating better 

psychosocial functioning.20,45,51 The adverse effects on families 

can persist for many years following injury.52,53

6 
THE MANAGEMENT OF TBI IN CHILDREN

 

 

 

CURRENT SERVICE DELIVERY SYSTEMS
 

The management of TBI in children is complex and 

dependent upon multiple service delivery systems that 

often are neither systematic, nor coordinated to provide 

care across the child’s lifespan. In particular, there is 

large variation in what constitutes follow-up care and 

service delivery in critical areas, such as insurance 

coverage, utilization of pediatric trauma centers, service 

delivery in the schools, early intervention services, 

support for transition to adulthood, and family support. 

The goal of initial management for all types of brain 

injury is to determine injury severity, and to safely triage 

individuals to the most appropriate level of care. At this 

time, a wide range of treatments are prescribed postinjury. Management may include recommendations 

for graduated return to activities (school and physical 

activities), medication, and a range of therapies and 

other treatments. 

The CDC is working to develop the first-ever 

evidence-based clinical guideline on the diagnosis 

and management of mild TBI among children 

and adolescents. This Guideline will be based on 

recommendations from a federal advisory committee, 

informed by a Pediatric Mild Traumatic Brain Injury 

Guideline Workgroup composed of leading experts in the 

field. Although the Pediatric Mild Traumatic Brain Injury 

Guideline workgroup acknowledged research gaps in 

both diagnosis and treatment of pediatric mild TBI, the 

Guideline — based on the current best available evidence 

and informed by expert opinion — will represent an 

important step forward in providing consistent care for 

children with mild TBI. There is also a need for stronger 

evidence to inform standards of care for the treatment 

of moderate and severe TBI. In the absence of evidence, 

individualized symptom management is the most common 

recommendation. There is evidence to suggest that care 

from pediatric specialists results in better outcomes for 

pediatric TBI patients. For example, children who receive 

inpatient rehabilitation at pediatric hospitals typically 

have more efficient functional improvement than children 

receiving inpatient rehabilitation at other hospitals.54

This is especially relevant to rural areas where access to 

pediatric specialized physicians and facilities55-5 as well as 

specialized TBI services58 are more limited. 

When children are ready to return to preschool or school, 

a range of supports and services are available, including 

early intervention services, special education under the 

Individuals with Disabilities Education Act,59 supports 

and accommodations through a Section 504 plan,60

and informal supports provided by a classroom teacher. 

Younger children (0 to 3 years) can be referred to early 

intervention services via Child Find, which requires school 

systems to identify, locate, and evaluate children from 

birth to 21 years of age with disabilities or suspected 

disabilities. School nurses and comprehensive healthcare 

clinics at schools provide an important system of health 

and mental health services for children with TBI. However, 

it is unclear to what extent nursing or special education 

services are utilized for TBI across the country, especially 

in private or charter schools. 

Families of children with a TBI can take advantage 

of resources available to parents of all children with 

disabilities (e.g., PACER Family-to-Family Health 

Information Centers, Parent Training and Information 

Centers). Some states offer support groups specifically 

for parents and families (www.biausa.org, www.usbia.

org). Furthermore, some state services provide case 

management for families to assist navigation between 

medical and school services. 

Each state and U.S. territory has a lead agency and 

coordinator for TBI services. States also rely on the 

Federal TBI grant program in the Administration 

for Community Living, Department of Health and 

Human Services, to meet the needs of underserved 

populations, including children and youth with a TBI. 

Twenty-three states have TBI trust funds designated 

by legislation to support services for individuals of 

all ages with a TBI. 

7 
REPORT TO CONGRESS

 

 

IDENTIFYING GAPS AND IMPROVING THE MANAGEMENT 

OF TBI IN CHILDREN 

There is frequently an incomplete understanding about 

the effects of TBI beyond the initial injury among parents, 

healthcare professionals, and educators.2,61-63 This often 

creates barriers to optimizing outcomes for children 

across their lifespan, including achievement of high school 

graduation, employment, and engagement in a healthy 

lifestyle. It is widely recognized that children with brain injury 

are under-identified for health and educational services and 

under-served by existing supports, placing them at risk for 

poor health and educational outcomes.61,64,65 Understanding 

the gaps in care and developing approaches for optimal 

assessment, access to services, and service delivery is 

critical to ensuring that children with TBI have the best 

possible treatment and outcomes. 

Access to comprehensive care 

at the time of injury 

Access to specialized care in a pediatric trauma center 

at the time of the injury is especially important for 

children because early injury care can influence long-term 

outcomes.66 There is substantial variation in care among the 

sites where children are seen for acute injury care. Not only 

are there inconsistences in TBI assessment, but also in the 

comprehensiveness of discharge recommendations for all 

severity levels of TBI.2,67

Long-term management 

Currently, there are no formal systems to monitor the health 

of children with a TBI over time. Most children with a TBI are 

discharged home following initial injury care at the ED.68

For children who are hospitalized, whether a child receives 

long-term medical rehabilitation services often hinges on 

health insurance status; only 1.5% of uninsured children 

move directly from the hospital to inpatient rehabilitation, 

compared to 4% of children with private insurance.68

Frequently, children who need pediatric rehabilitation 

services do not receive them. In the first year after injury, a 

substantial portion of children with moderate-to-severe TBI 

have unmet or unrecognized healthcare needs.69

Family support and training 

The suddenness of a TBI forces parents into multiple 

roles, including advocacy for their child in the healthcare 

and school settings.70-72 Few parents understand the 

potential for a TBI of any severity level to become a chronic 

medical condition, nor are they aware of the pathways 

to care beyond initial medical services. When children 

return to school, parents often encounter a lack of 

understanding about the effects of the injury and find that 

school services are not suitable for a student who has 

experienced a TBI in the midst of their development.73

In the long-term, parents and caregivers may experience 

impairment to their own functioning due to the stress 

experienced when caring for their child. 

Return to school 

Many students who sustain a TBI will need post-injury support 

at school, ranging from informal academic support specific 

to their symptoms67,74,75 to longer-term formalized support 

(e.g., early intervention services, special education services, 

support and accommodations through a Section 504 

plan). However, children and their families often experience 

difficulties accessing these services. 

The causes of an inability to access 

available educational services include: 

•	 A lack of communication between healthcare and 

educational institutions about a child’s injury2,76,77, 

•	 The potential under-identification of students with TBI 

for special education services61 and 

•	 A lack of awareness of educators about the effects of 

TBI on learning.73,78,79

Further study is needed to understand the type and 

availability of school-based services and qualified staff to 

serve students with TBI in rural areas. 

8 
THE MANAGEMENT OF TBI IN CHILDREN

Return to activity 

Although return-to-play guidelines for sports have been 

devised for mTBI, similar consensus guidelines have 

not been developed for return to other recreational and 

physical activities outside of organized sports. 

Following TBI, children are 

at risk for increased social 

isolation and reduced 

participation in activities 

outside of the school setting, 

and this can have harmful 

effects on their well-being. 

While there may be awareness of these risks among 

those who care for children, there is a lack of guidance 

as to how to minimize these risks. Additionally, neither 

consensus nor evidence-based guidelines for return to 

activities after moderate and severe TBI exist. 

Transition to adulthood for children 

with TBI 

As children reach adulthood, the transition from pediatric 

to adult medical care providers is a particular area of 

clinical concern.81 Research has demonstrated that access 

to (and use of) healthcare services declines significantly 

as adolescents transition to adult care, resulting in worse 

health outcomes in adolescents with identified health 

conditions.81-84 In the public school system, only children 

enrolled in special education when they enter high school 

9 
REPORT TO CONGRESS

 

receive transition planning for post high school graduation as 

part of their educational program under IDEA. Private schools 

that do not accept federal funds are not required to provide 

specialized educational services for transition plans for 

students with a TBI. 

Professional training 

Effective medical and educational management practices 

implemented by trained professionals can contribute 

to successful outcomes for children with TBI. However, 

many medical, educational, and other professionals who 

provide care and support for children after TBI received 

limited training specific to TBI recognition or management. 

Further, there is a significant lack of healthcare providers 

with pediatric-specific TBI training.85 Lack of adequately 

trained healthcare providers leads to inconsistent and 

variable clinical assessments, inconsistent diagnoses, 

variable guidance about expected recovery course, and 

variability in management decisions early and later after 

injury. In the school setting, teachers lack training in their 

academic programs86 and continue to have some basic 

misconceptions and knowledge gaps about TBI and the 

effects of brain injury on students in their classrooms.78 In 

general, educators need better training in methods that are 

effective with students with TBI.61,87-89

Research 

We currently know very little about long-term outcomes 

for children with TBI. At present, most management of TBI 

is based on consensus guidelines and expert opinion.90-94

Only a few rigorous, systematic clinical trials have been 

performed.93 For mTBI, the most recent guidelines 

recommend pacing, or gradual return to cognitive 

and physical activities, as tolerated by symptoms.95-97

Implementation of those pacing recommendations, as 

the cornerstone of management in this population, is 

variable. High-quality studies are necessary to determine 

the ideal duration and intensity of rest, and the ideal time 

to introduce both cognitive and physical activity. There is 

wide variation in the use of medications after mTBI, with 

no high-level evidence for the use of any medication.98

Managing more prolonged symptoms has not been the 

focus of prior consensus statements or guidelines and 

is primarily based on consensus opinion.99 A wide range 

of medical, behavioral, physical, and other therapies are 

used in the management of mTBI, but definitive, high-level 

evidence-based guidelines do not currently exist. CDC is 

currently developing the first evidence-based guideline for 

the management of mTBI in children, based on a systematic 

review of the available evidence conducted by a panel of 

pediatric mTBI experts. This guideline will include clinical 

recommendations based on the systematic review and is 

expected to be released in 2018. 

More research is needed
 

to understand children’s
 

long-term outcomes and
 

effective management
 

approaches that support
 

children achieving adult
 

milestones, such as high
 

school graduation and
 

employment.
 

Further, we need to better understand how management 

and intervention across a child’s lifespan relate to everyday 

improvements for children and their families. Overall, there 

is a critical need to reduce variability and inconsistency in 

care delivered at the time of injury, and over the long-term 

after mild and more severe pediatric TBIs. Standardization of 

care is critically needed; however, a better evidence base is 

required to inform management practices. 

10 
OPPORTUNITIES FOR ACTION 

Opportunities for Action: Enhancing Healthcare Services to Improve 

the Management of TBI in Children 

At the time of the injury visit 

•	 Healthcare providers assessing TBI can consistently inquire about the child’s medical history and family 

circumstances, and consider these factors in treatment planning. Providers can advise parents to 

maintain a record of their child’s TBI history to complement data in a child’s medical record. 

•	 Healthcare providers can offer guidance and written information to caregivers about the types 

of healthcare, state, and school services that are available for their children after a TBI. 

Healthcare providers should encourage caregivers of children with a TBI to remain with a “medical 

home,” or consistent primary care provider, across the child’s lifespan to facilitate care that is 

more comprehensive. 

Opportunities for post-injury services 

• Systematic examination of healthcare-to-school transition programs and practices is necessary by 

educators and healthcare providers to inform the field about best practices. 

•	 Hospital systems and healthcare providers can work to optimize and streamline delivery of postacute care, rehabilitation, and community services for children with a TBI, and their families. 

Adoption of quality care standards (e.g., The Commission on Accreditation of Rehabilitation Facilities, 

an independent nonprofit accreditor of health and human services) can facilitate improvement of 

service delivery. Existing networks, such as Child Find, a state-based reporting system for locating 

and assessing children suspected of needing specialized school services, can be utilized to address 

potential needs across the continuum of care. 

Systems opportunities for clinical decision-making tools 

• Clinical decision support tools are promising, but need wider use and evaluation to demonstrate their 

utility and effectiveness. 

THE MANAGEMENT OF TBI IN CHILDREN 11 
Opportunities for Action: Improving Children’s Return to School, 

Activity, and Independence After a TBI 

Models of care 

•	 Policies that expand support for school-based health clinics and telemedicine can be considered as 

a means to improve follow-up care after a TBI, especially in rural communities. 

•	 Guidelines for return to sports after mTBI can continue to be refined and informed based on new 

evidence. Processes devised for return to sports can be amended to cover return to all children’s 

recreational activities, and also serve as a point of reference for return to sports and recreational 

activities after a more severe TBI. 

Monitoring and service delivery 

•	 Educators and medical professionals within states can ensure that all children who return to school 

following a TBI are monitored and that needed services or accommodations are received. 

•	 Educators and medical professionals should support the coordination of care across settings and 

providers that is centered on the comprehensive needs of children and their families. 

•	 School personnel can prominently note identified TBI history in school records, and monitor children 

during critical transition periods, such as the move from elementary to middle and high school. 

School transitions 

•	 Schools and state agencies can more frequently work with healthcare professionals to develop and 

evaluate healthcare-to-school transition processes for preschool children that better utilize statelevel services to help with the identification and management of TBI when these children begin 

elementary school. 

•	 Schools can monitor students as they transition from elementary to middle and then high school. 

•	 Schools can consistently work with families to identify the optimal pathway to learning (and subsequent 

high school graduation) to enhance adult outcomes for children who have sustained a TBI. 

Opportunities for Action: Improving the Transition to Adulthood for 

Children with TBI 

•	 Models of care for children with a history of a TBI who transition from pediatric to adult healthcare 

systems need to be developed and supported within the healthcare system. 

•	 Evidence-based approaches supporting the transition to post-secondary education and employment 

for students with TBI need to be developed to ensure optimal adult outcomes, and the effectiveness 

of these approaches in promoting healthy lifestyles for young adults needs to be evaluated. 

12 REPORT TO CONGRESS 
Opportunities for Action: Improving Professional Training for Those 

Involved in the Management of TBI in Children 

• Healthcare professionals who care for children after a TBI would benefit from more formalized 

training related to TBI diagnosis and management, both as part of their medical and nursing school 

programs and through continuing education. 

•	 Enhanced training of educators in TBI management is needed within education curricula, as well as 

through the expanded use of in-service training models. 

Opportunities for Action: Filling Knowledge Gaps 

More research is needed in the following areas in order to improve the care of TBI in children: 

Foundational science is needed 

•	 Produce comprehensive estimates on the incidence and underlying causes of pediatric TBI, as 

well as on the use of healthcare and rehabilitation services following a TBI. CDC’s pilot National 

Concussion Surveillance System can provide initial data, but long-term surveillance is needed to 

track trends to inform prevention efforts. 

•	 Investigate the effects of a TBI experienced during particular periods of brain development on 

subsequent physical, cognitive, behavioral, and social growth and development. 

•	 Disentangle how non-TBI-related issues, such as the child’s family environment and co-occurring 

health conditions, impact recovery. Identify modifiable risk and protective factors associated with 

short- and long-term outcomes of a TBI. 

•	 Determine the feasibility of developing a pediatric version of the TBI Model Systems database as a 

means to better understand long-term outcomes after pediatric TBI. 

•	 Collect natural history data that will describe differential recovery trajectories across both age and 

severity that could be used for the development of and presentation of personalized medical treatment. 

Science is needed to advance acute and long-term management of 

pediatric TBI 

•	 Evaluate existing healthcare-to-school transition models (i.e., return-to-learn processes). 

•	 Evaluate the efficacy of guidelines and management protocols across domains of care, including 

CDC’s forthcoming pediatric mTBI guideline. 

•	 Support clinical trials, rigorous quasi-experimental, and evaluation studies that examine 

effectiveness of healthcare, rehabilitation, and technology-assisted interventions across multiple 

settings, including, inpatient, outpatient, and at school. 

THE MANAGEMENT OF TBI IN CHILDREN 13 
REPORT TO CONGRESS

 

CONCLUSION 

In 1985, the first textbook on pediatric TBI management 

by Mark Ylvisaker, Head Injury Rehabilitation: Children 

and Adolescents,100 was published. This work was the first 

comprehensive documentation of the impact of a TBI on a 

developing child, and the need for improved management 

of TBI in children. Many of the opportunities for action in this 

report were noted in the original text, and continue as unmet 

needs after all this time. Over the past 30 years, we have seen 

a proliferation of research that better describes children’s 

brain development, outcomes from a TBI, and service needs. 

Unfortunately, services to support TBI management in 

children after initial injury care have declined in availability, 

length of time, and consistency within the United States. 

The information provided in this report represents a call-toaction to improve the care children receive after a TBI so 

they can maximize their potential for recovery. 

Moving forward, this effort will require increased 

coordination and collaboration among the many 

stakeholders focused on the burden of TBI in children. A 

quote from the Mark Ylvisaker book still resonates: “Longterm care extends beyond the four walls of our rehabilitation 

facility and touches all aspects of a child’s life.”100 All 

involved with the care of children can use this report and the 

opportunities for action within as a guide to improve care for 

children who sustain a TBI. 

14 
THE MANAGEMENT OF TBI IN CHILDREN

THE BACKGROUND 

BACKGROUND 

The Traumatic Brain Injury Act of 2008 (Pub. L. 110-206) 

(TBI Act) authorized research and public health activities 

related to TBI. It amended Part J of Title III of the Public 

Health Service Act (42 U.S.C. 280b et seq.) by, among other 

things, inserting section 393C-1 entitled Study on Traumatic 

Brain Injury. This section authorized the Secretary of Health 

and Human Services, acting through CDC, to conduct a 

study on traumatic brain injury. The Traumatic Brain Injury 

Reauthorization Act of 2014 

(Pub. L. 113-196) directed CDC to compile a Report to 

Congress on the management of TBI in children, specifying 

that the “Director of CDC in consultation with the Director of 

NIH shall conduct a review of the scientific evidence related to 

brain injury management in children such as the restriction or 

prohibition of children from attending school or participating 

in athletic activities following a head injury, and identify 

ongoing and potential further opportunities for research.” 

15 
REPORT TO CONGRESS

SECTION I 

The first section of this report 

describes the public health burden 

of TBI in children by providing 

information on incidence, disability 

prevalence, health disparities, and 

the economics of injury care for 

children. 

SECTION II 

Section II describes the range of 

impacts experienced by children 

who sustain a TBI. 

SECTION III 

Section III describes service delivery 

systems and the continuum of care 

in the healthcare and educational 

systems, availability and access 

of care for children, state-based 

services for children, and a 

description of the current state of 

care for all injury severities. 

SECTION IV 

Section IV identifies gaps in the 

care received by children who have 

sustained a TBI, and describes 

practices that may be a means to 

better ensure optimal care. 

The final section offers opportunities 

for action that are aimed at 

addressing key gaps in the science 

and practice of caring for children 

who have sustained a TBI. 

The CDC developed a plan 

to address the legislative 

language within the TBI 

Act of 2014 that directed 

the CDC to produce a 

Report to Congress on the 

management of TBI in 

children. 

In July 2015, the CDC convened a writing group 

consisting of internal TBI subject matter experts 

along with external experts that specialize in TBI 

medical and educational services. In August 

2015, a report outline was presented to a group of 

external reviewers with diverse pediatric experience 

including physicians, educators, parents, state 

and federal agency representatives, and university 

researchers to provide feedback on the proposed 

report content. Incorporating reviewer feedback, 

the co-authors devised a first draft of the report by 

reviewing the scientific literature related to the topics 

of: TBI outcomes, brain development in children, 

management of TBI in children, policies related to 

the management of children with special healthcare 

needs, disabilities as a result of developmental 

conditions, and health disparities. Searches of 

databases including Medline, PubMed, Cumulative 

Index to Nursing and Allied Health Literature (CINAHL), 

PsychInfo, and Education Resources Information 

Center (ERIC) were completed for TBI-related outcome 

and intervention studies. No date limit was applied 

in most of the search strategies. Searches were 

performed using keywords such as: brain injury, 

concussion, children, adolescent, pediatric, family, 

outcomes, intervention, management, effect, 

sequelae, prognosis, function, rehabilitation, cognitive, 

education, school, behavior, and social. 

16 
THE MANAGEMENT OF TBI IN CHILDREN

 

The authors conducted a broad-based review of the 

literature, including studies that might not have met the 

criteria used in systematic reviews, such as literature 

examining emerging and current “best practices” in 

children’s TBI rehabilitation. The writing team also 

examined policy documents related to the provision 

of services for children with medical conditions and 

disabilities. CDC initiated a meeting with the Department 

of Health and Human Services stakeholders (i.e., National 

Institute of Health (NIH), Eunice Kennedy Shriver National 

Institute of Child Health and Human Development (NICHD), 

National Institute of Neurologic Disorders and Stroke, 

(NIH/NINDS) and the Administration for Community Living 

(ACL), whose purview touches on the management of TBI in 

childre,n to discuss the report plan and release timeline. 

TBI subject matter experts at the CDC, leadership in the CDC’s 

Division of Unintentional Injury Prevention, and the external 

reviewer group reviewed the initial draft. The final draft 

incorporated feedback from these reviewers. Representatives 

from the National Center for Medical Rehabilitation Research 

(i.e., NICHD/NCMRR), ACL National Institute on Disability, 

Independent Living and Rehabilitation Research (ACL/ 

NIDLRR) and the Office of Head Start (Administration for 

Children and Families) have served as external reviewers of 

the report outline, initial draft, and final document. 

17 
REPORT TO CONGRESS

THE PUBLIC HEALTH BURDEN OF TRAUMATIC BRAIN INJURY IN CHILDREN 

THE BURDEN 

SECTION I 

INCIDENCE 

Traumatic brain injury in children represents a significant 

public health burden in the United States. 

A traumatic brain injury 

disrupts the normal function 

of the brain, and can be 

caused by a bump, blow, 

or jolt to the head, or a 

penetrating head injury.3 

In 2013, there were approximately 640,000 TBI-related 

emergency department (ED) visits, 18,000 TBI-related 

hospitalizations, and 1,500 TBI-related deaths among 

children 14 years of age and younger.1 The leading cause 

of TBI-related ED visits, hospitalizations, and deaths for 

those 0-14 years of age were unintentional falls and being 

struck by or against an object, whereas for those 15-24 

years of age the leading causes were motor vehicle crashes 

and falls.1 Sports and recreation-related TBIs are a leading 

cause of TBI-related ED visits among children and teens 

with an estimated 325,000 occurring in 2012.4

Children with TBI can present to a number of clinical 

locations: the ED, urgent care clinics, primary care, 

concussion/sports medicine clinics, or other specialty clinics. 

In addition, some do not seek or receive medical care.101

Recent research examining the point of entry in a large 

healthcare network found that among pediatric patients with 

mild TBI (mTBI), 82% initially visited primary care, 5% visited 

specialty care, and 12% visited an ED.102 This information 

suggests that incidence estimates of pediatric TBI based 

solely on ED visit data are significant undercounts, likely 

missing those with mTBIs seen at lower levels of care, in 

addition to those with mTBIs who don’t seek care at all.101

Because of these gaps in TBI surveillance, researchers have 

found it difficult to accurately estimate the true incidence 

of pediatric TBI, a critical factor in understanding the public 

health burden it represents.5,103,104

18 
Rates of TBI-related deaths and TBI-related hospitalizations among children 

have decreased in recent years (i.e. from 2007 to 2013).1 However, TBI-related 

ED visits among children have significantly increased during the same time 

period.1 More specifically, ED visits as a result of TBIs experienced during 

sports and recreational activities have increased.4 The increase in ED visits 

may not be a true increase in incidence, but rather a response to increased 

public concern about concussion, resulting in a higher likelihood of seeking 

care, improved training of clinicians in concussion diagnosis, and the passage 

of legislation in all 50 states requiring healthcare provider clearance prior to a 

child returning to play. 

INJURY SEVERITY 

TBI severity is typically separated into categories of mild, moderate, and 

severe based on a patient’s initial clinical presentation, and is measured by 

behavioral indicators, primarily the Glasgow Coma Scale (GSC),105 and the 

pediatric coma scale.106 As defined by the GSC, a score of 13-15 is labeled 

an mTBI, a score of 8-12 is labeled a moderate TBI, and a score less than 8 

is labeled a severe TBI.105 Complicated mild TBI is a designation given when 

a child has a mild GSC rating (13-15) with neuroimaging findings (e.g., skull 

fracture, intracranial bleeding) on the day of injury.107-109 The presence of a 

visible abnormality on imaging suggests greater neuropathology in the child’s 

brain at the time of injury, although the long-term effects of such documented 

changes on children’s brain structure and outcomes are mixed.108,110,111 The 

concept of mTBI is thus viewed as a continuum when imaging findings are 

included in the severity ratings. 

Most TBIs are mild, and are commonly called concussions.112 From this point 

forward, we will refer to concussions as mild TBI (or mTBI). Mild TBI accounts for 

70-90% of TBI-related ED visits.5,6 In a study of children seeking emergency medical 

care from hospitals for TBI (N=2940), 84.5% had mTBI, 13.2% had moderate 

TBI, and 2.3% had severe TBI.113 Moderate-to-severe TBI occurs at a lower rate 

than mTBI in children, but is associated with worse outcomes. In addition, African 

American, Hispanic, and Native American children are more likely than white 

children to experience more severe TBI, and have higher mortality rates.114-117

MECHANISM OF INJURY 

The cause, or mechanism of TBI, is an important consideration in 

understanding its epidemiology because the mechanisms of injury suggest 

the types of events that need to be prevented. The leading mechanisms of TBI 

vary by age, but falls, motor-vehicle crashes, and sports and recreation-related 

injuries are the primary mechanisms of injury in children. 

In a study of children seeking 

emergency medical care 

from hospitals for a TBI: 

19 

85% 

HAD mTBI 

13% 

HAD 

MODERATE 

TBI 

2% 

HAD 

MODERATETO-SEVERE 

TBI 

70-90% 

OF ED VISITS 

THE MANAGEMENT 

OF TBI IN CHILDREN 
REPORT TO CONGRESS

Falls are the leading cause of TBI-related ED visits in the 

youngest children (0-4 years), accounting for more than 

70% of TBI-related ED visits in this age group in 2013.1

Injuries caused by falls (35.1%) and being struck by, or 

against an object account for the majority of TBI-related 

ED visits among youth 5-14 years of age.1 For persons in 

the 15-24 years age group, the proportions of TBI-related 

ED visits resulting from assaults, falls, and motor vehicle 

events are nearly equal.1 African American, Hispanic, 

and Native American children are more likely than white 

children to experience a TBI caused by violence114-117 or to 

be struck by a motor vehicle while walking or bicycling.116

In 2012, approximately 430,000 ED visits resulted from 

sports and recreation-related mTBI.4 Nearly 70% of those 

ED visits (325,000) were among those 0-19 years of age.4

From 2001 to 2012 the rate of sports and recreationrelated ED visits increased significantly among males, 

particularly among those 10-14 years of age (139.9% 

increase) and those 15-19 years of age (119.3% increase). 

Among males, the largest number of ED visits for sportsand recreation-related mTBI occurred as a result of injuries 

while bicycling, or playing football or basketball. A similar 

increase was found for females, particularly among those 

15-19 years of age (211.5% increase) and those 10-14 

years of age (145.2% increase). Among females 0-19 

years of age, the largest number of ED visits for sports 

and recreation-related mTBIs occurred as a result of 

injuries while bicycling, engaging in playground activities, 

or horseback riding.4 In addition to sports-related injuries, 

the rate of ED visits for playground-related TBIs significantly 

increased from 2005 to 2013.118

During 2001–2013, an annual 

average of 21,201 children 14 

years of age and younger were 

seen in the ED for playgroundrelated TBIs. The highest rates 

of playground-related TBIs 

were found among males and 

children 5-9 years of age. 

Abusive head trauma (AHT) in children is a mechanism of 

injury most frequently experienced by young children, and 

it generally results in moderate or severe injury. Annual 

estimates of AHT ED visits and hospital admissions from 

2001 to 2006 were 3,227 nationally; nearly two-thirds of 

those visits resulted in hospital admission, a reflection of 

the typical severity of AHT.119

THE EFFECTS OF TBI IN 

CHILDREN 

Adults with moderate-to-severe TBI who receive inpatient 

rehabilitation typically experience significant changes in 

critical aspects of their daily life. These include higher 

rates of unemployment, disability, and even a reduced 

life expectancy.120,121 However, children, who are in the 

midst of significant brain development, differ greatly 

from adolescents and adults in brain biomechanics, 

pathophysiology, and neurodevelopment.122 Injuries 

of any severity to the developing brain can negatively 

impact children’s behavior and cognitive skills as they 

grow, placing them at risk for significant changes to their 

developmental trajectory across multiple domains. An 

additional consideration is that children typically recover 

well in relation to the outward physical manifestations of 

the injury (e.g., physical skills), but may have sustained 

damage to their brain, affecting thinking and behavior that 

is often not visible. The “invisible” nature of a TBI may lead 

to unmet care needs and difficulties with meeting societal 

expectations, resulting in misattribution of an individual’s 

behavior, and discrimination.123

To date, little research has examined long-term adult 

outcomes following a childhood TBI. In particular, it 

is unclear how changes in brain development and 

skill attainment caused by a TBI in childhood impacts 

achievement in adult metrics, such as educational 

attainment, employment, and adult health. The burden of 

TBI in children can be explained by examining disability, 

participation limitations, economic impact, and disparities in 

healthcare. In this section, we provide an overview of these 

issues with more details offered in subsequent sections. 

20 
THE MANAGEMENT OF TBI IN CHILDREN

PREVALENCE OF DISABILITY 

It is unclear how many children currently live with a TBIrelated disability, largely because childhood disability is 

not defined consistently. For example, some groups define 

disability by a child’s limitations or eligibility for special 

education, whereas others use rehabilitation service 

utilization as a metric. A study published in 2008 estimated 

that 145,000 children were then living with a TBI-related 

disability nationally. However, that number was calculated 

by extrapolating national estimates from discharge 

dispositions in a single state.124 Disability estimates 

based on the use of specialized medical and educational 

services indicate that more than 61.6% of children with 

moderate-to-severe TBI received new services, compared 

with 14.3% of children with mTBI, and 8.3% of children 

with arm injuries.7 Although service utilization is highest 

among children with severe TBI, the higher incidence of 

mTBI disproportionally skews the number of children using 

services toward those with mTBI. 

ECONOMIC IMPACT 

Estimates of the economic impact of a TBI vary 

depending on how costs are considered. Using data from 

a nationally-representative sample, Brenner, Harman, 

Kelleher, and Yeates125 estimated that healthcare 

expenditures for mild-to-moderate TBI-related services 

in children averaged $77.9 million per year, with an 

average per capita expenditure of $1,044 ($166 for TBIspecific services and $878 for general healthcare). The 

estimates produced by that study did not account for the 

costs associated with a severe TBI, so they represent 

an underestimate of the total cost of TBI. Another study 

calculated that pediatric TBI inpatient charges accrued to 

more than one billion dollars per year for TBI-associated 

hospitalizations.126 A study of the direct medical costs of 

AHT, which tends to result in more severe TBI in children 

compared to other causes, estimated the annual cost to 

be $69.6 million nationally.119

21 
REPORT TO CONGRESS

OUTCOMES AND CONSEQUENCES OF TBI IN CHILDREN 

THE OUTCOMES 

SECTION II 

A TBI of any severity 

experienced by a child 

can contribute to health 

difficulties, physical 

impairments, cognitive 

difficulties, and deficits 

in behavior, socialization, 

adaptive functioning, and 

participation.8-11
 

Studies comparing children who sustained a moderateto-severe TBI and an injured control group (e.g., children 

who sustained an orthopedic injury) have found that the 

children recovering from a TBI generally have lower life 

satisfaction, reduced adaptive functioning, and lower rates 

of participation in activities, and those changes persist over 

time.7,10,127 Although most children will have a good recovery 

after mTBI,13,14 some children with mTBI are at risk for 

disability and long-term effects that alter their participation 

in school and the community.127

The effects of brain injury in children are additionally 

complex because the injury impacts a brain that is still 

developing. A child’s course of recovery is superimposed on 

normal developmental processes, potentially affecting not 

only previously-learned skills, but also the development of 

future skills. Thus, problems can manifest years after the 

injury, as the complexity of skills required to meet future 

developmental milestones increases. Potential problems 

include later academic failure, chronic behavior problems, 

social isolation, difficulty with employment and relationships, 

and in some cases, involvement in illegal activities.128-131 The 

effects of a TBI are frequently described as “heterogeneous” 

and “diverse” because each injury and course of recovery 

is unique. In addition to the developmental processes 

described above, children may experience other health and 

learning difficulties or social and familial challenges, and any 

of these can complicate the recovery process. 

22 
THE MANAGEMENT OF TBI IN CHILDREN

The frontal area of 

the brain, which plays 

an important role in 

behavioral regulation, 

begins to develop 

in early childhood 

and continues into 

adulthood. 

THE EFFECTS OF TBI 

ON THE DEVELOPING BRAIN 

Children’s brains differ from their adult counterparts in both structure and function. As 

children mature, the systems that control brain function build over time and are influenced 

by a person’s genetics and life experiences.132-136 For example, the frontal area of the 

brain, which plays an important role in behavioral regulation, begins to develop in early 

childhood and continues into adulthood. Thus, a variety of behavioral abilities, such as the 

development of social skills and impulse control, are not fully attained until late adolescence 

or adulthood. Attainment of these complicated skills can be harmed when children sustain 

a TBI in childhood, before these systems 

have fully developed.137 Although it is 

known that children’s brain development is 

vulnerable following a TBI, there are many 

unanswered questions about the timing, 

resiliency, or mechanisms by which brain 

systems develop throughout childhood. 

Consequently, little is known about how a 

TBI interacts with this process. 

Recent brain imaging studies found 

reduced brain size and structural changes 

in certain areas of the brain among 

children who experienced a TBI with imaging findings, especially at a young age,138-140

supporting the notion that disruptions in brain systems during childhood could underlie 

observed behavioral and neurocognitive changes, and academic problems years later.139,141

Although the exact effects of a childhood TBI on brain development require more study, 

emerging physiological and imaging findings of anatomic changes suggest the importance 

of protecting children from sustaining TBIs. Recent research supports the notion of a TBI 

as a chronic condition in adults because of the number of health, cognitive, behavioral, 

and social effects that can persist or progress over an individual’s lifespan.142 Similar longterm chronic effects almost certainly impact children in similar ways, except potentially 

for a longer period of time. More studies are needed that follow children into adulthood to 

understand these relationships. 

MEDICAL AND HEALTH OUTCOMES 

Medical and health outcomes in children are complicated by the fact that children can have 

other developmental conditions, such as Attention-Deficit/Hyperactivity Disorder, which may 

contribute to experiencing a TBI, or compound the effects of a TBI. 

23 
REPORT TO CONGRESS

SYMPTOMS OF mTBI 

HEADACHES DIZZINESS THINKING AND MOODS AND SLEEP 

MEMORY PROBLEMS EMOTIONS DIFFICULTIES 

Mild TBI 

Common symptoms of mTBI include headaches, dizziness, and problems with 

thinking/memory, changes in moods/emotions, and sleep difficulties (Table 

1).12-20 Symptoms usually develop immediately, but they can also develop over a 

few days after injury. Longitudinal studies 

suggest that most children with mTBI recover 

from the initial symptoms within 6 weeks 

after injury, with 30-60% having persistent 

symptoms at one month post-injury, 10% 

at three months post-injury, and less than 

5% at one year post-injury.13,14,21-23 Although 

children can recover quickly from the initial 

30-60% 

of children with mTBI 

have persistent symptoms 

one month post-injury. 

symptoms, little information is available about the long-term outcomes of single 

or multiple mTBIs in children, particularly among those who experience an mTBI 

at a young age. In addition to changes in thinking and memory, children can also 

experience changes in their motor systems, such as balance143 and postural 

instability,144 and these can affect the motor performance that is critical for a 

return to physical activities.145

Cumulative effects of mTBIs 

Some children experience more than one mTBI, and there is limited and conflicting 

information about how multiple injuries can affect outcomes.146 One recent 

study found that a previous mTBI was associated with longer time-to-symptom 

resolution.147 Symptom duration was influenced by the number of prior mTBIs and 

the time elapsed since the most recent injury.147 There have also been incidents 

in which a combination of subclinical blows to the head and mTBIs are thought to 

have led to severe TBI, resulting in diffuse brain swelling and death.148,149 These 

incidents highlight the importance of immediately removing children from sports 

and recreational activities when an injury is suspected. There is also growing 

concern that cumulative head trauma over a lifespan can lead to cognitive and 

behavioral decline later in life, and that early exposure to head trauma, even 

if subclinical, could be a contributing factor to these impairments many years 

later.150-154 In general, however, studies are mixed regarding the effects of multiple 

mTBIs in relation to cumulative problems,146 and documentation of more than one 

mTBI is inconsistent and infrequent in medical records. 

24 
THE MANAGEMENT OF TBI IN CHILDREN

 

TABLE 1 

Common symptoms after mild TBI 

(Adapted from the fact sheet, CDC HEADS UP for Healthcare Providers) 

THINKING AND 

MEMORY PHYSICAL MOODS AND 

EMOTIONS SLEEP 

• Has difficulty thinking 

clearly 

• Feels slowed down 

• Has poor concentration 

and poor memory 

• Forgets instructions 

• Answers questions slowly 

• Feels sluggish, hazy, foggy, 

or groggy 

• Dazed or stunned 

appearance 

• Clumsy movements 

• Headache 

• Fuzzy or blurry vision 

• Nausea or vomiting 

• Dizziness 

• Balance problems 

• Double or blurry vision 

• Sensitivity to noise 

or light 

• Fatigue 

• Poor energy 

• Mood, behavior, or 

personality changes 

• Irritability 

• Sadness 

• More emotionality 

• Nervousness or anxiety 

• Just not “feeling right” 

or “feeling down” 

• Sleeping more than 

usual 

• Sleeping less than 

usual 

• Trouble falling asleep 

Moderate-to-severe TBI 

More severe injuries can cause a range of medical, health, cognitive, motor, emotional, and behavioral issues that can 

present early and later after injury, and the severity of issues can change over time. The significance of problems might 

not be realized until years after the injury when higher-level cognitive and behavioral functioning is required to meet 

typical developmental milestones, especially when the injury occurs at a very young age.24-28 Medical issues that occur 

after a TBI can affect multiple body systems (Table 2). For children who survive severe injuries, long-term morbidity is a 

significant risk.42 Acute injury factors associated with increased morbidity and disability include: the presence of abnormal 

eye reflexes; abnormal muscle tone and posturing; a GCS score below 7; age of injury less than 2 years; low blood 

pressure; elevated blood sugar; low blood oxygen levels; poor brain blood flow; development of post-traumatic amnesia; 

and physical abuse as the mechanism of injury.155-164 GCS scores at 72 hours and oxygen levels during emergency 

evaluation are factors highly predictive of the risk for long-term global disability after TBI in children.165 Children with more 

severe TBI can experience a greater number of motor control symptoms than those with mTBI (Table 2). Even children 

who recover well physically following moderate-to-severe TBI are likely to have decreased balance and gait speed, and 

increased step variability while walking, all of which can limit participation in sports and other activities.166 Overall, 

children with more severe injuries are at greater risk for developing complex medical conditions, such as seizures, and are 

more likely to require support for eating via feeding tubes, requiring considerably more comprehensive medical services 

and management by caregivers. 

25 
REPORT TO CONGRESS

TABLE 2 

Summary of possible medical
 

issues after a traumatic brain injury
 

MEDICAL ISSUE DESCRIPTION 

Autonomic 

dysfunction 

Autonomic dysfunction after a TBI is characterized by increased heart rate, breathing rate, 

temperature, blood pressure, sweating, and muscle activity.

167 Autonomic dysfunction is 

more common in moderate-to-severe TBI, but little is known about this area in mTBI. 

Disorders of 

consciousness 

(e.g., decreased 

levels of arousal) 

Disorders of consciousness that typically occur after a severe TBI include: coma, vegetative 

state, minimally conscious state, and post-traumatic confusional state.168 Children with 

disorders of consciousness after a TBI often survive longer than similarly affected adults, 

and they are more likely to regain consciousness.162,163

Post-traumatic 

headaches 

Post-traumatic headaches occur after a head injury, and are one of the most common 

problems encountered after a pediatric TBI.169 In mTBI, headaches are very common 

initially, but resolve or return to baseline over time. A smaller percentage of children develop 

persistent headaches long-term after an injury. 

Swelling or 

increased fluid in 

the brain 

A TBI can result in a state of increased fluid or swelling in the brain in all severity levels. 

Clinical signs of increased fluid or swelling can include irritability, or depressed mental 

status, seizures, increased muscle tone, and functional decline. Treatment for post-traumatic 

hydrocephalus can require placement of a drain.170,171

Problems 

with hormone 

production and 

regulation 

Problems with hormone production and regulation can occur after a TBI. Monitoring for 

such problems after pediatric TBI is especially important because growth, including physical 

172-180 and brain development, can be significantly altered by hormone abnormalities.

Regular screening for brain-related endocrine problems is recommended after moderateto-severe pediatric TBI because endocrine problems can develop months or years after 

an injury.

181 Timely management of endocrine dysfunction after a pediatric TBI helps to 

facilitate normal growth and development.

173

Gastrointestinal/ 

nutritional 

problems 

Injuries to the abdominal area or problems with the gastrointestinal (GI) system are common 

after a TBI.

165 Even without an associated GI injury, children with a severe TBI are at risk for GI 

problems, including upper GI bleeding, reflux, constipation, and other bowel problems.182 Early 

identification of GI problems is crucial, so appropriate treatments can be started. Children 

might require a feeding tube to support nutritional and energy needs.

183

26 
THE MANAGEMENT OF TBI IN CHILDREN

Urinary system 

problems 

Problems with the urinary system are common after severe brain injuries.

184 Many of those 

urinary problems resolve over time after an injury.

185

Motor dysfunctions Tight or spastic muscles, poor coordination, tremors, weakness, and deficits in balance are 

common motor abnormalities seen after all severities of pediatric TBI.186-197 The location 

of injury in the brain determines the type of motor dysfunction that follows pediatric TBI. 

Problems associated with motor impairments can lead to problems in developmentally and 

age-appropriate function, including walking and self-care skills, along with the ability to 

participate in higher-level sports and recreational activities. 

Respiratory 

problems 

Unexpected bone 

growth 

Children can experience breathing problems that require intubation at the time of injury 

and, if the condition persists, tracheostomy placement.

198 Practices for airway management 

are followed more often in severe TBI. The incidence of tracheotomy placement in 

children is 2.9% for those requiring craniectomy.

199 Long periods of unconsciousness and 

mechanical ventilation are associated with respiratory complications beyond injury care.

200

201-203 The incidence of bone growth in unexpected areas after severe pediatric TBI is 10-23%.

This typically occurs about four months post-trauma.

201 The hip, knee, shoulder, and elbow 

are the most commonly-involved sites.202

Blood clotting Blood clotting disorders can occur after mostly moderate-to-severe TBI, leading to 

disorders complications.

204

Sensory issues Vision and hearing can be affected after a TBI of all severities. Double vision can result 

from injury to nerves in the brain or head and facial areas.

205 An injury affecting the vision 

tracts in the brain can cause loss of vision in certain areas. A TBI that leads to severe brain 

swelling in a child can result in blindness; some or complete recovery can occur. In mTBI, 

visual and eye movement problems are also common.

206 Hearing loss after a TBI commonly 

results from a fracture of the temporal bone, and is usually one-sided.

207,208 However, even 

mild hearing loss puts a child at risk for impaired development of skills, such as speech 

development. Problems in smell or taste resulting from injuries to certain nerves in the 

brain or head and face are often associated with decreases in appetite, which lead to 

feeding problems. An inability to appreciate body odor and maintain appropriate hygiene 

can lead to social challenges for teens with deficits in smell after a TBI. 

Seizures Most seizures occur immediately (<24 hours) after a pediatric TBI.209-212 The incidence of 

seizures after pediatric TBI ranges from 9.6- 68% for early (< 7days) seizures209-213 to 1-20% 

for late (>7 days) seizures.

211,213,214 Children less than 3 years of age with a severe brain 

injury, brain swelling, or a displaced skull fracture have a higher risk of early post-traumatic 

seizures.215 Children with a severe TBI are also at increased risk of developing seizures 

216,217 longer after injury (>10-15 years) than adults.

27 
REPORT TO CONGRESS

COGNITIVE, BEHAVIORAL, AND SOCIAL EFFECTS OF A TBI 

Cognitive problems after 

a brain injury affect not 

only learning, but also how 

children interact with their 

environment. 

Potential cognitive, academic, and social effects are 

summarized in Table 3. Common cognitive effects 

observed after injury include impairments in attention, 

memory, processing speed, and executive functions 

(cognitive flexibility or the ability to switch thinking about 

topics quickly, working memory, self-monitoring, selfregulation, planning, organization, and decision-making).42

These thinking and behavioral controls underlie a child’s 

behavior and interaction with other people and the 

environment. The subsequent behavioral and social effects 

of childhood TBI across the spectrum of severity can greatly 

affect quality of life for children and their families. In a 

study examining social participation, parents reported 

a reduction and limitations in peer interactions and 

community activities for children discharged from inpatient 

rehabilitation.10 In addition, the long-term effects of such 

injuries — achievement of adult milestones, such as high 

school graduation, enrollment in post-secondary education, 

healthy lifestyles, and employment — remain unknown. 

28 
THE MANAGEMENT OF TBI IN CHILDREN

mTBI 

Although initial recovery for most children with mild injury is 

relatively quick (typically 1-6 weeks),13,14,218,219 even an mTBI 

can have academic, social, and quality-of-life implications 

for children and their families.16,220-222 Studies have noted 

increased hyperactivity and reading impairments in some 

children following mTBI, among other problems; however, 

development of long-term cognitive and behavioral deficits 

is unlikely following a single mTBI.12,18-20,223-226 Up to a third 

of children with mTBI develop behavioral or psychological 

symptoms that persist beyond the initial injury recovery 

period, such as poor conduct and problems with empathy 

and peer relationships.14,20,227,228 More recent research 

examining social behavior in children after mTBI found 

difficulties in social outcomes, including problems with 

emotional perception, social skills, social problem-solving, 

and social language use.9,137,229 It is unclear why persistent, 

long-term issues emerge for some children who experience 

mTBI. Emerging evidence suggests that pre-injury health 

conditions and a history of more than a single mTBI 

contribute to longer recovery and persistent symptoms.147,230

Moderate-to-severe TBI 

Changes in cognition following moderate-to-severe TBI 

can directly affect a child’s daily life at school and home 

for years. In particular, executive function deficits were 

reported 5-10 years post injury in children with severe 

injuries.231,232 Changes in executive functioning and other 

aspects of cognition contribute to deficits in behavioral and 

social interactions after a TBI. Many children experience 

personality changes, and exhibit a range of maladaptive 

behaviors as a result of a brain injury and its related 

cognitive changes.42 More than two-thirds of children 

with a severe TBI develop psychiatric disorders following 

an injury.233 Social functioning, defined as the way an 

individual uses their social skills to interact with others,234

is often significantly affected by a childhood TBI.137 Children 

with an early brain injury (before 2 years of age) are 

especially vulnerable to significant social impairment.235

During the transition from childhood to adolescence, 

when expectations for the use of appropriate social 

skills increase, social-emotional challenges can become 

increasingly apparent among children injured when they 

were much younger.236-238 Difficulties can include disruptive 

behavior, emotional distress, poor conduct, and problems 

with empathy, moral reasoning, and peer relationships.239

Addressing potential social-behavioral deficits can be 

even more critical to successful school functioning than 

addressing academic and cognitive deficits.9,240,241

Changes in cognition and behavior as a result of a TBI can 

affect children’s healthy lifestyle choices, and contribute 

to negative outcomes, such as placement in restrictive 

environments (i.e., incarceration), substance abuse, harm 

to self and others, and reduced life expectancy.42

Potential cognitive, academic
 

and social-behavioral effects of a TBI 137,241
 

Cognitive Self-regulation, executive function, attention, information processing, memory problems 

Academic Inconsistent learning, knowledge gaps, lower educational attainment 

Social-behavioral Deficits in social information processing, peer relationships, social adjustment skills, 

language use, and participation 

TABLE 3 

CATEGORY DESCRIPTION 

29 
REPORT TO CONGRESS

School outcomes 

A child’s daily life is centered on school, social 

participation, and extracurricular activities. 

A TBI of any severity can negatively affect a 

child’s future ability to learn and perform in 

school.29 Children with a moderate-to-severe TBI 

earn worse grades, show higher rates of grade 

retention, and receive more special education 

services than their uninjured peers.30-33 Students 

with a mild injury typically recover within a few 

weeks, and most 

of them return to 

their pre-injury 

classrooms. 

14%

of children who However, in 

a large study experienced an 

following children mTBI needed 

younger than educational 

18 years of age, 

support services 14% of children 

who experienced at school twelve 

an mTBI needed months later.7 

educational 

support services at school twelve months later.7

Furthermore, educational needs can emerge over 

time as school demands increase, especially 

among children injured at a young age. In a crosssectional study, children with complicated mild 

and moderate TBI needed more school supports 

6 years post-injury than they did 2 years postinjury.111 Recent studies examining adults with a 

history of mTBI also report an increased risk for 

lower educational attainment, particularly among 

those who sustain multiple mTBIs.242

Transition to adulthood 

Young adults with a TBI experience cognitive 

and neuropsychological consequences that can 

significantly influence their educational and 

vocational outcomes after high school.243,244

Moving from childhood 

to adulthood 

A growing body of research 

indicates that for many 

children with a TBI, exposure 

during childhood is associated 

with risks of impaired adult 

functioning,245 and career 

outcomes are poor after 

high school.37-40 One study41

examining students with 

moderate-to-severe TBI found 

that fewer than half of these 

students who had been out of 

school a year or more had a 

paying job outside the home. 

Students with a TBI who 

qualified for special education 

(severity not specified) had 

lower rates of enrollment in 

post-secondary education than 

students with: 

•	 Hearing impairments 

•	 Visual impairments 

•	 Orthopedic impairments 

•	 Speech or language 

impairments 

•	 Autism 

•	 Learning disabilities 

•	 Other health impairments 

30 
THE MANAGEMENT OF TBI IN CHILDREN

Students with a TBI also showed lower rates of 

independent living than those with most other disabilities. 

Post-secondary outcomes following childhood TBI suggest 

that students with a TBI who enrolled in post-secondary 

education or training were more likely to emerge 

unprepared for employment.39 At age 25, most individuals 

who sustained a moderate-to-severe childhood TBI still 

worked at entry-level or low-skilled jobs, whereas their 

nondisabled peers had higher-paid skilled and professional 

positions.246 Even young adults injured late in high school 

might not experience the full effects of changes in their 

cognition until they start college. 

The transition to adult healthcare can also be a challenge 

for children who sustain a TBI. A recent integrative review 

of healthcare for children with developmental health 

conditions reports the current process of transition to adult 

healthcare for children is deficient in providing consistent 

and sufficient transfer from pediatric to adult healthcare.247

Currently, unlike other chronic healthcare conditions in 

children, children with a TBI may not be consistently seeing 

a specialty care provider. In many cases, there may not 

be a particular healthcare provider who follows the child 

across development into adulthood who can manage the 

transition to an adult provider. A contributing factor is that 

a child’s primary healthcare provider may not be informed 

about the TBI experienced or a child’s TBI history. As 

knowledge about TBI-related health effects in adulthood 

emerges, the critical importance of managing that 

transition becomes more evident. 

31 
REPORT TO CONGRESS

FACTORS THAT INFLUENCE OUTCOMES 

Many factors, including injury severity, age, individual patient 

characteristics, social-environmental factors, and access to 

healthcare can influence recovery from childhood TBI. 

FACTORS 

AGE AT SEVERITY INDIVIDUAL FAMILY AND ACCESS TO
 

INJURY OF INJURY CHARACTERISTICS ENVIRONMENT HEALTHCARE
 

Age at injury 

TBI at younger ages is associated with worse outcomes than an injury sustained 

later in development.26,40,248 TBIs occurring at ages that coincide with critical periods 

of brain and cognitive development can result in more pronounced difficulties.249

As children with a history of TBI develop, behavioral and cognitive problems can 

continue to emerge as task demands increase over time.236,250 For example, children 

who sustain a moderate-to-severe TBI before the age of 7 years have substantially 

worse outcomes than children who suffer a similar injury at an older age.251-256

Young children with more severe injuries have more 

pronounced problems with cognitive and school-readiness 

skills, including memory, spatial reasoning, and executive 

function.8,257-259 Sustaining a severe TBI at an early age is 

also associated with poor employment outcomes. After 

leaving school, those youth are more likely than youth 

injured later in childhood to hold entry-level or low-skilled 

jobs with low pay, and they work fewer hours per week.40,248

Severity of injury 

More severe injury is associated with long-term effects on 

cognitive and school readiness skills, including memory, 

spatial reasoning, and executive functioning. 8,257-260

However, it appears that the influence of injury severity 

Children who sustain 

a moderate-tosevere TBI before 

the age of 7 years 

have substantially 

worse outcomes than 

children who suffer 

a similar injury at an 

older age. 

wanes over time as one study found that injury severity was less predictive of 

outcomes compared to other factors one year post-injury.261 A severe injury at a 

young age has been associated with the poorest long-term outcomes, including 

lower cognitive skill recovery.40,262,263 However, emerging studies have demonstrated 

risks for behavior and social difficulties following even mTBI in children.264-266

32 
THE MANAGEMENT OF TBI IN CHILDREN

Compared to children with TBI caused by unintentional 

injuries, children who sustain AHT experience a more 

severe form of injury and have worse outcomes on average. 

Factors contributing to poor outcomes for this mechanism 

of injury include younger age of injury,159,267-269 more severe 

initial injuries,268-272 and higher rates of secondary brain 

injuries from poor oxygenation of the brain.268,271,273 These 

types of injuries frequently call for more comprehensive 

medical management, requiring some parents to care for 

a child with a tracheostomy, feeding tube, or other medical 

interventions. Children who experience AHT are often 

removed from their homes due to ongoing concern for their 

safety and are placed in foster care. Thus, not only are 

some children forced to deal with changes in their medical 

condition, but they must also adapt to a different family 

environment, an important contributor to TBI recovery. 

Individual characteristics and 

pre-injury functioning 

Individual characteristics, such as gender, genetics, preinjury cognitive ability, learning disabilities, coping styles, 

and health conditions, such as ADHD, anxiety, depression, 

mood disorders, and migraines are potentially important 

determinants of outcomes following TBI.22,47,91,274-284 Recent 

research reports a high prevalence of TBI in adolescent 

athletes with a history of ADHD or diagnosed learning 

difficulties.285 Mental health conditions, such as depression 

and anxiety, poor problem-solving skills, and considerations 

aligned with suicide risk286 are also associated with TBI in 

children.233,287 Emotional symptoms in adolescents after 

a sports-related mTBI can contribute to the development 

of new psychiatric disorders, isolated suicidal ideation, 

and worsening symptoms of a pre-existing psychiatric 

disorder.288 Although limited research has been done on 

co-occurring conditions in children, the context of other 

health and learning conditions in a child’s life can affect 

their outcomes following a TBI.2,289,290 Particularly in young 

children, it is difficult to determine whether a health or 

learning condition was present before the injury or if the 

condition was a result of or exacerbated by the TBI. 

Pre-injury functioning is also correlated with various 

cognitive and behavioral outcomes. Persons with higher 

levels of pre-injury cognitive functioning often preserve 

more functional capacity after a TBI than those with lower 

pre-injury function.291 This hypothesis suggests that a 

person might be able to use cognitive resources post-injury 

to support their recovery and functioning. Younger children 

have less cognitive reserve than older children because 

of their short life experience and developmental stage. 

For example, a child who has a TBI at age 4 has not yet 

learned to read, whereas a child who experiences a TBI at 

age 14 has not only learned to read but is reading complex 

material. Finally, growing evidence for the role of genetic 

influence on outcomes suggests that some alleles, or 

gene variants, might confer neuro-protection to some and 

vulnerability to others post-TBI.292

Family and environmental factors 

Socioeconomic status and family functioning also 

influence recovery trajectory.43-47 Family-level factors are 

critical social-environmental influences on outcomes in 

children following a TBI,48 including caregiver distress 

or depression and deteriorating family functioning.293,294

Aspects of the home environment, such as parental 

responsiveness, negativity, and discipline practices are 

linked to a child’s behavioral recovery.295,296 Economic and 

social disadvantage are associated with poor cognitive 

and academic outcomes following severe TBI.45,49 Negative 

social outcomes from TBI are further exacerbated postinjury when family environments include low socioeconomic 

status, limited resources, and poor family functioning.241

Limited resources may be tied to where the family lives. 

Access to pediatric specialized physicians and facilities 

is more limited in rural areas55-57 due to availability of 

transportation, distance from home to healthcare, as 

well as specialized TBI service availability.58 Family 

socioeconomic disadvantage combined with severe injury 

lead to the poorest long-term outcomes.297

In any family environment, a TBI is an unexpected event 

that can create significant changes in family structure. 

Parents often have to take time off from work to care for 

children. Depending on the length of hospitalization and 

child care requirements, parents sometimes need to leave 

their employment, which changes a family’s financial 

status. Furthermore, parents sometimes change their 

33 
REPORT TO CONGRESS

parenting practices after the injury because of their 

worry and concern, and that further affects the child’s 

outcomes.298 Regardless of injury severity, many parents 

recognize differences in their child compared to their preinjury status, which creates worry and concern for their 

future, especially as they approach adulthood.50

Several studies have demonstrated that a childhood TBI 

can have persistent adverse effects on caregiver and 

family well-being. The stress on parents from caring for the 

injured child often leads to increased marital conflicts299

and high levels of psychological symptoms and distress 

in family members.52,300,301 Factors, such as greater 

injury severity,52,301,302 high levels of chronic family stress, 

coupled with deficient resources,303 maladaptive coping 

strategies,35,303,304 and unmet healthcare needs293 appear 

to place caregivers at elevated risk for psychological 

distress. Parent/caregiver burden and family dysfunction 

are a particularly important consideration because they 

are a strong determinant of a child’s psychosocial recovery, 

with children from well-functioning families demonstrating 

better psychosocial functioning.45,49,51 The adverse effects 

on families can persist for many years following injury.52,53

A TBI during childhood is associated with offending 

behavior and incarceration in adolescents.131,305-307 In a 

longitudinal birth cohort study, TBI status was associated 

with criminal behavior, regardless of age at injury and 

injury severity.307 Factors that contribute to risk for 

incarceration after a TBI include substance abuse,131,307

experiencing multiple TBIs,131,305 untreated TBI,306

mental health diagnosis,131,305 and family disadvantage 

(low socioeconomic status and parental education).307

Of concern is that the incarceration can occur during 

adolescence, a time when the transition to adulthood 

is just starting, making it even more difficult to achieve 

successful educational and vocational milestones.308

34 
THE MANAGEMENT OF TBI IN CHILDREN

MODELS OF SERVICE DELIVERY, AVAILABILITY, AND ACCESS FOR 

CHILDREN: CURRENT STATE OF CARE 

THE CARE 

SECTION III 

Assessment and 

management of TBI in 

children often starts in the 

healthcare system, frequently 

in the ED or primary care 

physician’s office. 

After initial injury care, children generally return to their 

schools and communities for continued management of the 

effects of the TBI. Children receive care from two separate 

service delivery systems in the healthcare and educational 

settings, and these two settings are often not well-coordinated 

or integrated.2 In addition, there is large variation in the 

services available at the state and community level. This 

section describes ongoing medical management, school 

services, and community-based care children receive following 

brain injury. Very little evidence supports any of the currently 

used models of service delivery; where it is available, however, 

we include the evidence of efficacy. 

MEDICAL MANAGEMENT 

Mild TBI 

Many children with an mTBI visit an ED for initial care, 

although those who are older than 5 years of age 

and have private health insurance typically see their 

pediatrician.102 Regardless of the treatment location, the 

goal of initial management for all types of brain injury is 

to determine injury acuity, and safely triage individuals to 

the most appropriate level of care. Across all severities 

of brain injury, it is important to assess immediately for 

the possibility of more severe injury or other potential 

injuries (e.g., injury to the spinal cord) that would require 

immediate evaluation. It is important to assess airway, 

breathing, and circulation, as per the emergency care 

guidelines, to make sure the individual is medically 

stable.91 When more severe or immediately lifethreatening problems have been ruled out, the focus can 

turn to assessing and managing signs and symptoms of 

mTBI. Currently, the highest level evidence is for patient 

and family education. Table 4 provides a summary of 

current pediatric mTBI management evidence. 

35 
REPORT TO CONGRESS

TABLE 4 

Summary of the evidence base 

for mTBI management 93 

MANAGEMENT ISSUE EVIDENCE 

LEVEL 

Baseline neuro-cognitive testing if child/adolescent plays high-risk sports B 

Assess and treat any physical, cognitive, and neurologic deficits A/B 

Determine need for CT imaging A 

Consider admission or prolonged observation if child/adolescent shows red flag symptoms (e.g., severely 

worsening headaches, repeated vomiting, change in state of consciousness) 

B 

Treat acute headaches C 

Prescribe physical and cognitive rest B/C 

Provide verbal information and written handouts to child/adolescent and parents/caregivers A/B 

Educate on expected course of recovery and return to learn/play B 

Advise on risks and complications of re-injury, especially persistent symptoms B 

Advise on managing sleep proactively C 

Advise on managing headaches B 

Advise on coping with fatigue B 

Advise on maintaining social networks and interactions B 

Advise on avoiding alcohol and other recreational drugs B 

Advise on not driving during recovery B 

Advise on general monitoring; promote regular follow-up with primary care or sports medicine physician 

until symptoms disappear; refer to specialized care if symptoms persist after one month 

B/C 

Recommend a stepwise return-to-learn plan B/C 

Implement return-to-learn plan after acute symptoms have improved B/C 

Recommend additional assessment and accommodations if symptoms worsen or fail to improve B/C 

Implement return-to-play plan only after return-to-learn program has started B 

Refer to an expert in mTBI for help with return-to-play decisions or retirement from contact sports B 

Provide verbal information and written handouts to individual and parents/caregivers A/B 

Assess any modifiers (e.g., pre-injury history of TBI, learning disabilities, depressive disorder, or migraine 

disorder) that might delay recovery 

B 

Eliminate medications that might mask or modify symptoms B 

Pre-activity or injury 

Initial presentation after injury 

Discharge after initial presentation 

Interim assessment — When can the child/adolescent return to learn and play? 

Re-assessment after one month — What to do if symptoms persist? 

36 
THE MANAGEMENT OF TBI IN CHILDREN

 

Assess, document, and manage significant, prolonged complaints based on specific symptoms, etiology, 

and time since injury 

Assess and treat any physical, cognitive, and neurologic deficits 

Place every child on a sleep hygiene program 

Screen for factors that can influence sleep/wake cycle 

Consider non-pharmacologic treatments to improve sleep 

Consider prescribing medications on short-term basis if sleep has not improved 

Refer to pediatric sleep specialist if sleep not improving 

Take detailed headache history 

Establish the degree and duration of the disability caused by the headaches 

Perform neurologic exam and a head/neck exam 

Consider non-pharmacological, complementary, or alternative medicine therapies for headache 

Consider treating migraine headaches with prescription medication 

Assess for persistent cognitive difficulties 

Manage any cognitive impairments 

Assess for balance and vestibular impairments 

Assess for benign positional vertigo 

Refer for further assessment and treatment if balance or vestibular system is dysfunctional 

Assess ongoing vision dysfunction 

If visual disturbance is present, refer to vision specialist 

Assess/manage persistent fatigue symptoms 

Assess for existing and new mental health symptoms and disorders 

Obtain report of mood and feelings from child/adolescent and parents/caregivers 

Treat any mental health problems 

Consider referral to pediatric mental health specialist 

Recommend rehabilitation therapy to improve symptoms and mobility, as needed 

Consider broad differential diagnosis 

Consider need for specialist therapy if symptoms persist 

Work with primary care professional and school/employer on accommodations to tasks or schedules 

Provide verbal information and written handouts to child/adolescent and parents/caregivers 

Grading system 

B 

B 

C 

B 

C 

C 

C 

B 

C 

C 

C 

B 

B 

B 

B 

B 

B 

B 

B 

B 

B 

B 

B 

B 

B 

C 

B 

B 

A/B 

A=	 Consistent, good-quality, patient-oriented evidence (examples: at least one large randomized control trial, 

meta-analysis, systematic review with homogeneity, or large, high-quality, multi-center cohort study) 

B=	 Inconsistent or limited-quality patient-oriented evidence (examples: smaller cohort studies, case studies, and control 

trials with limitations) 

C=	 Consensus, usual practice, opinion, or weaker-level evidence 

Source: (www.essentialevidenceplus.com/product/ebm_loe.cfm?show=sort. Accessed May 8, 2014)309 

37 
REPORT TO CONGRESS

Recognizing the lack of evidence-based pediatric 

mTBI guidelines, the CDC’s National Center for Injury 

Prevention and Control’s (NCIPC) Board of Scientific 

Counselors (BSC) created the Pediatric Mild Traumatic 

Brain Injury Guideline Workgroup to inform the 

development of a guideline. This workgroup conducted 

a review of the existing literature, and developed 

recommendations for healthcare providers who care 

for children after an mTBI. The workgroup, composed 

of leading experts in the field, submitted a report titled, 

Systematic Review and Clinical Recommendations for 

Healthcare Providers on the Diagnosis and Management 

of Mild Traumatic Brain Injury in Children to the NCIPC 

BSC in August 2016.315 The report presents evidenceinformed recommendations based on a rigorous 

review of the literature on mTBI care for children. 

Recommendations were made in the areas of diagnosis, 

prognosis, and management/treatment. The report, 

informed by public comment and approved by the NCIPC 

BSC, will be used to advise the development of the 

first evidence-based guideline on the diagnosis and 

management of pediatric mTBI in the United States. 

A variety of medications are used to treat the symptoms 

of an mTBI;310-313 however, there are no definitive, 

evidence-based recommendations.98 The most common 

medications used in mTBI symptom management in 

children are headache-related medications.311 Other 

medications are also used to manage the variety of 

symptoms that occur after an mTBI, including cognitive, 

behavioral, mood, emotional, sleep, fatigue, and 

concentration/attention problems.310 Currently, there 

is no known medication that will speed recovery, and 

most medication use for mTBI is off-label. It is also 

common for children with a range of persistent symptoms 

to be referred for speech, occupational, behavioral/ 

psychological, physical, vestibular, vision, and other types 

of therapy to manage cognitive, behavioral/emotional, 

and physical problems following an mTBI.314 At this time, 

a wide range of treatments are prescribed post-injury; 

however, the field lacks the strong evidence-base needed 

to definitively inform standard of care recommendations. 

Individualized symptom management is the most common 

recommendation. To date, most evidence available for 

the management of pediatric mTBI is level B (inconsistent 

or limited-quality patient-oriented evidence [examples: 

small cohort studies, case studies, and control trials with 

limitations]) or C (consensus, usual practice, opinion, or 

weaker-level evidence).93

38 
THE MANAGEMENT OF TBI IN CHILDREN

 

 

MODERATE-TO-SEVERE TBI
 

With more severe TBI, 

aggressive medical 

management is often 

needed, and rapid transfer 

to a pediatric trauma center 

is recommended. 

Computed tomography (CT) scans typically assess for 

structural problems, such as skull fractures, brain 

swelling or bleeding, and pressure on the brain. Due to 

concerns that radiation associated with CT scan use in 

children can lead to an increased risk of brain cancer 

later in life, clinical decision rules have been developed 

for when CT scans should be considered to identify 

clinically significant brain injuries.317 The use of those 

rules is generally reported to be favorable.318,319

After initial stabilization, management of children with 

more severe injuries depends on the presenting signs 

and symptoms. Acute medical management guidelines 

have been published, but the acute medical care 

provided for moderate-to-severe brain injuries continues 

to vary.320 Treatment at a certified pediatric trauma 

center is generally associated with better outcomes 

than treatment in other facilities.66 A variety of critical 

care interventions is used to manage the various acute 

medical issues that present after injury, including 

increased pressure in the skull or brain (i.e., increased 

intracranial pressure), blood pressure variability, 

glucose abnormalities, temperature variability, 

nutritional deficits, respiratory problems, seizures, and 

blood clotting disorders.160,320-335 Evidence is mixed, 

and there is variable implementation of management 

strategies; however, adherence to acute and critical 

care TBI guidelines is associated with improved 

outcomes.160,320,324-329,332-337

Although much acute medical management focuses on 

survival and minimizing acute medical problems, it is 

important to pursue the ultimate goal of returning the 

child to optimal function and quality of life. Delaying 

the transition from an intensive care unit (ICU) to acute 

rehabilitation results in fewer functional benefits than 

early transition. Earlier initiation of a formalized inpatient 

brain injury rehabilitation program is associated overall 

with shorter hospital stays and improved outcomes.338,339

Transfer to rehabilitation is recommended as soon as 

the child is medically stable.340 Inpatient rehabilitation 

involves a multidisciplinary, specialized team typically 

led by a physician who specializes in rehabilitation 

medicine and guides the management of the physical, 

cognitive, and social issues encountered by children 

and their familes after TBI.341 Critical management 

domains for acute rehabilitation after pediatric TBI 

include ongoing medical management; family-centered 

care; cognitive, communication, speech, language, 

and swallowing impairments; gross and fine motor 

skill impairments; neuropsychological, social, and 

behavioral impairments; school reentry; and community 

integration.314 The portion of hospitalized children 

discharged to inpatient rehabilitation is estimated to 

be 3.7%, but this number varies widely among states.68

According to the authors, inpatient mortality of pediatric 

hospitalized patients and being uninsured contribute to 

this estimate. Availability of specialized TBI rehabilitation 

programs, especially in rural areas, insurance coverage 

for rehabilitation services, and eligibility for inpatient 

rehabilitation services, all contribute to the low use 

of rehabilitation care.55-57,342,343 Insurance coverage is 

identified as an important factor in children’s access to 

specialty care, such as rehabilitation. Although children 

with public insurance (Medicaid and CHIP) may have 

better access to specialty care than children without 

insurance, they are less likely to have access to specialty 

care than children with private insurance.344

As with mTBI, various medications are used to manage 

the chronic sequelae of moderate-to-severe TBI.345

However, the evidence for specific medication usage after 

brain injury is poor, and use in pediatric TBI is generally 

off-label.345,346 Medications are used to manage a range 

of medical, cognitive, behavioral, psychological, pain, 

39 
REPORT TO CONGRESS

and other issues that occur after pediatric brain injury; 

however, a definitive evidence base and guidelines for 

use of medications are lacking.345,347-349 The extrapolation 

of medications used in adult TBI to children should be 

done carefully because a child’s response can differ 

from an adult’s. Because there is a paucity of strong 

evidence for the use of medications in the management 

of pediatric TBI sequelae, more research is needed. 

HEALTH DISPARITIES 

IN TBI CARE 

Disparities in care for children who have experienced 

a TBI have been documented in relation to race/ 

ethnicity, disability status, sex, income, geography, 

and insurance status.115,350-356

In a national study of children 

with special healthcare 

needs, a higher prevalence 

of special healthcare needs 

was reported among older 

children, African Americans, 

males, and children from 

low-income or single-parent 

households.357 

Those patterns align with studies reporting disparities 

in care received and outcomes among African 

American350,351,353 and Hispanic children,355,358 relative 

to non-Hispanic white children. In addition, several 

factors are associated with a lower likelihood of being 

hospitalized for pediatric TBI, including younger age, 

non-white race, being uninsured, and being treated at a 

community hospital (versus a trauma center).354 Primary 

care physicians are more likely to be the single source of 

care for persons with TBI-related disability in rural areas, 

and they are unlikely to have received advanced training 

in the management of a TBI.55

There is evidence to suggest that care from pediatric 

specialists, relative to care from adult healthcare 

providers, results in better outcomes for pediatric TBI 

patients. Children who receive inpatient rehabilitation 

at children’s hospitals typically have more efficient 

functional improvement than children receiving inpatient 

rehabilitation at other hospitals.54 Overall, pediatricfocused inpatient rehabilitation units meet a larger total 

number of inpatient rehabilitation quality indicators 

than other facilities.359 Facilities with therapists 

specially trained in pediatrics had the best adherence to 

motor, neuropsychological, and community integration 

quality indicators.314 Inpatient rehabilitation units that 

admit only children also did better than other units 

in the cognitive, neuropsychological, and school reentry domains, with Commission on Accreditation of 

Rehabilitation Facilities certification associated with 

better adherence in the school re-entry domain.314

However, it is important to note that in the continuum of 

care following a moderate-to-severe TBI, acute medical 

care lasts only weeks to months, whereas the management 

and recovery that occur in outpatient medical settings and 

at home and school lasts for many years. One of the best 

predictors of receipt of outpatient rehabilitation is receipt 

of inpatient therapies or consultation with a rehabilitation 

physician during acute care.360

Children with abusive head trauma (AHT) are more 

often diagnosed at pediatric hospitals than in nonchildren’s hospitals or referred for hospital admission 

from pediatrician offices and outpatient settings.361 They 

typically have worse outcomes post-injury compared 

to those who experience unintentional injury, in part 

because their family environment is frequently altered 

as a result of the intentional nature of the injury. Keenan 

and colleagues report that one year later, almost 50% 

of the children with AHT continue to be in some type of 

foster care.362 AHT is considered a more severe form of 

injury in children younger than age 2, and children with 

AHT are 8 times more likely to have a long duration of 

hospital stay.361,362 Most likely, children in foster care 

have public insurance.362

40 
THE MANAGEMENT OF TBI IN CHILDREN

SCHOOL MANAGEMENT: RETURN TO LEARN
 

Children with all levels of TBI severity experience cognitive and behavioral problems 

that can adversely affect school performance.29,363,364 Children with a TBI have more 

daily performance variability, difficulty learning new information (despite maintaining 

pre-injury skills), and knowledge gaps, as well as cognitive deficits, including 

attention, concentration, and processing speed difficulties. These difficulties can 

make academic work more challenging following a TBI. Furthermore, behavioral 

problems, such as poor conduct, and problems with empathy and peer relationships 

can negatively affect the school experience.14,20,227 A range of supports and services 

are available for children ages 0-22, including early intervention services, special 

education under the Individuals with Disabilities Education Act (IDEA, 2004), supports 

and accommodations 

through a Section 504 

plan,60 and informal 

supports provided by a 

classroom teacher. 

The vast majority of 

brain injuries in children 

are mTBIs,6,365 with 

CLASSROOM CHALLENGES 

DIFFICULTY 

LEARNING 

KNOWLEDGE 

GAPS 

COGNITIVE 

DEFICITS 

EMOTIONAL AND 

BEHAVIORAL PROBLEMS 

symptoms typically 

lasting 1-6 weeks.65 When students who experience mTBI return to school, most will 

respond positively to a well-orchestrated, short-term plan of physical rest, simple 

classroom adjustments (e.g., extra time on tests, reduced homework load), and 

slight environmental changes (e.g., fatigue breaks).75 Many schools use a Response 

to Intervention (RTI) model in general education whereby students with learning 

difficulties are provided with supports and tailored interventions at varying levels of 

intensity depending on their needs (RTI Network; www.rtinetwork.org). However, there 

is variation in RTI implementation among states.366

Students who have ongoing symptoms following a TBI 

can receive formalized supports and accommodations 

through a Section 504 plan60 to ensure they have full 

access to the academic curriculum. A 504 plan might 

include physical accommodations (e.g., automatic door 

openers), assistive technology (e.g., keyboard for taking 

notes), or a modified class schedule. 

Most children will 

respond positively to a 

well-orchestrated, shortterm plan of physical 

rest, simple classroom 

adjustments, and slight 

environmental changes. 

41 
REPORT TO CONGRESS

 

This plan could also include accommodations to 

compensate for limitations that could prevent the 

student from fully taking part in classroom learning or 

demonstrating what s/he has learned, such as being 

allowed to use a tape recorder rather than taking notes 

in class, being granted extra time to take a test, or 

having a quiet place designated for study or test-taking. 

Other accommodations frequently recommended for 

students as part of a 504 plan following a TBI include a 

shortened school day, help with organization, memory 

aids, and rest breaks. 

Special education 

Students with a TBI who have significant learning or 

behavioral challenges might be eligible for special 

education services in public schools. Categories for 

eligibility under IDEA were originally designated to 

represent developmental conditions, such as learning 

disabilities, while acquired medical conditions, such 

as TBI, were grouped under the other health-impaired 

(OHI) category. TBI was added as a specific eligibility 

category under IDEA in 1991. To qualify for services 

under the TBI eligibility category, most states require 

SHORT-TERM PLAN 

Accommodations may include: 

medical documentation of an event (of any severity) 

likely to have caused a TBI. Assessments must show a 

difference between the student’s pre- and post-injury 

performance, and the student must demonstrate a need 

for specially designed instruction to benefit from the 

educational environment. For students deemed eligible 

for special education after a TBI, a team, typically 

composed of parents, the student (if older than age 14), 

a special education teacher, a regular education teacher, 

and a district representative, create an individualized 

education plan (IEP) that details how the student’s 

education will be specially designed. It can include 

services, such as speech-language therapy, physical 

therapy, occupational therapy, or special classes to 

help the student benefit from educational services. It 

can include intensive academic and social-behavioral 

intervention by a special education teacher and must 

include specific, annual academic goals. IDEA contains 

several protections for students on IEPs and their 

parents, including an annual review of the student’s 

progress that can be used to update IEP goals for the 

coming year. IDEA is mandated for all public schools 

in the U.S. 

PHYSICAL EXTRA TIME REDUCED MORE SPECIFIC HELP 

REST ON TESTS HOMEWORK LOAD FREQUENT BREAKS AT SCHOOL
 

42 
THE MANAGEMENT OF TBI IN CHILDREN

IDEA is designed to 

improve educational 

opportunities and 

performance for all 

children with disabilities, 

regardless of their 

enrollment in public 

schools or parent-placed 

private schools. 

As authorized by the 2004 Amendment to IDEA,367 public 

schools are required to engage with private school 

representatives and parents of these children, and use 

the Child Find process to identify students who may be 

eligible for special education.367 According to a recent 

report, 43% of private schools have students receiving 

IDEA services. This percentage is larger than utilization by 

private schools of any other federal education program. 

Speech therapy and special education instruction are 

the most common services utilized by students in private 

schools.368 Private schools vary regarding provision of 

special education and rehabilitation services, by state and 

individual school practices. 

43 
REPORT TO CONGRESS

Special case:

Children injured before age 5
 

Students injured before starting formal 

schooling (younger than age 5) do 

not have a single point of entry for 

services outside of a hospital.77 One 

source of follow-up care is with the 

child’s pediatrician or family physician. 

Children from birth to 3 years can be 

referred to early intervention services 

funded by the state and federal 

government to minimize the effects 

of a disability or developmental delay. 

Infants and toddlers who are delayed 

in development, or have a diagnosed 

medical condition with a high likelihood 

of affecting their development, can also 

be referred to state-based programs 

by their parents, physicians, hospitals, 

schools, state agencies, child care 

providers, or social service providers. 

States are required to coordinate payment for early 

intervention services from federal, state, local, and private 

sources, including public and private health insurance. 

All states and territories receive funds for a statewide 

system of multidisciplinary coordinated care through Part 

C of the Grants for Infants and Families program of IDEA 

(Office of Special Education Programs). Once a referral 

is made, the family provides permission for an initial 

assessment, which is done in a natural environment for 

the child (i.e., the home.) For children deemed serviceeligible, an individualized family service plan (IFSP) is 

devised to include all services (e.g., medical treatment; 

nursing; physical, occupational, and speech therapy; social 

services; and counseling) the child will be receiving, the 

type of environment where the services will be delivered, 

and the schedule for progress review. Coverage for services 

under Part C extends past age 3 years at which time 

there are requirements to include education in addition 

to other medically-based services contained in the plan. 

For children with existing IFSPs, a plan is developed to 

transition to other services upon reaching 3 years of age. 

Young children are more likely to be in day care and 

preschool prior to school entry. In 2011, 61% percent of 

children between the ages of 3-6 were enrolled in centerbased care (day care, nursery school, preschool or Head 

Start).369 Head Start programs, in particular, provide or 

obtain evidence-based vision and hearing screenings 

as well as a screening to identify concerns regarding 

a child’s developmental, behavioral, motor, language, 

social, cognitive, and emotional skills. In addition, and 

in consultation with parents, Head Start programs 

determine whether each child has ongoing sources of 

continuous, accessible health care provided by a health 

care professional that maintains the child’s ongoing health 

record, and ensures that children with identified health 

conditions receive follow-up care (§ 1302 Subpart D – 

Health Program Services). 

Transition-age youth 

For children and adolescents with TBI, the transition 

to adulthood is a period of vulnerability.39,40 Successful 

transition to post-secondary education and career 

opportunities is more likely to occur when students 

receive transition services and access to resources that 

can help them identify realistic post high school goals 

and provide connections to vocational rehabilitation.40

Like younger students, transition-age youth identified 

as eligible for special education due to the effects of 

a TBI can receive a range of services (e.g., specialized 

instruction, augmentative therapies) under IDEA. In 

addition, beginning no later than age 16, all students who 

have IEPs must receive services designed to help them 

successfully transition from high school to adulthood.370

Private, charter, and homeschool services 

Very little is known about how children with a brain injury 

are supported in private and charter schools. Children in 

private schools and homeschools are entitled to services 

under IDEA, and can receive ancillary (occupational, 

physical, and speech therapy) services under an IEP; 

however, private schools are not mandated to provide 

the same educational services as public schools. 

44 
THE MANAGEMENT OF TBI IN CHILDREN

RETURN TO PLAY AND RECREATIONAL ACTIVITY
 

Return to play and participation in recreational activities 

is another important consideration for children. 

Managing the return to these activities involves 

understanding the child’s symptom resolution, including 

response to increased exertion, and the characteristics 

of the activity. The primary concerns are ensuring that 

children do not have additional mTBIs, a more severe 

TBI, or adverse health effects because they have 

returned to the activity too soon. Most of the work in this 

area has focused on sports-related mTBIs, and experts 

have developed protocols and guidelines for a graduated 

return-to-play protocol. 

The Sideline Concussion Assessment Tool (SCAT)371­

373 and the Acute Concussion Evaluation (ACE)374,375

are often used on sidelines and in EDs to screen for 

the signs and symptoms of mTBI. The SCAT is on its 

third version, and has been adopted by several sports 

organizations. Both SCAT and ACE require special 

training for their scores to be valid or useful, and 

individuals with the necessary training and expertise 

are not always present at youth sporting activities. The 

SCAT3 is used in some outpatient clinic settings to 

assess and guide management of mTBIs. The CDC’s 

HEADS UP program for parents, coaches, and children/ 

adolescents has several online training modules that 

describe how to recognize an mTBI and appropriately 

remove an individual from activities to prevent further 

injury.376 HEADS UP also includes information for 

healthcare providers on assessing and managing a 

return to activities, along with materials providers can 

offer patients and their families in clinic.376

45 
REPORT TO CONGRESS

The use of neurocognitive 

and neuropsychological 

assessments has been a 

significant part of mTBIrelated research and clinical 

practice for more than 25 

years.377-379 

The use of computerized assessments for the evaluation 

of mTBI has increased exponentially in community and 

clinical care settings recently.378 There are several tests 

available for use.379,380 Computerized assessments are 

intended to be part of a multifactorial assessment and not 

a standalone evaluation.378,380 Although neurocognitive and 

neuropsychological assessments generally have a relatively 

strong empirical foundation, evidence to definitively guide 

their use in assessing and managing mTBI is insufficient. 

There is also insufficient evidence to decide whether 

traditional or computerized assessments are superior.377,381

Likewise, although having an accurate measure of baseline 

cognitive functioning, especially for individuals with 

above- or below-average cognitive functioning pre-injury, 

is believed to be helpful,379 the evidence is insufficient 

to recommend preseason baseline testing as time- and 

cost-effective or even as superior to not testing.377

Additionally, there are concerns about the reliability and 

validity of computerized screening.377,379 Sophisticated 

psychometric methods can help researchers interpret 

test results to identify cognitive problems and monitor 

recovery after injury,377 but continued refinement is 

needed. Incorporating a clinical neuropsychologist into 

the management team to assist with test interpretation is 

important380 but often not possible. 

Guidelines for return to non-sports physical 

activities (e.g., bike riding, playground activities) 

are currently lacking. In organized sports, once an 

mTBI is identified, all states require that children be 

assessed by an appropriate healthcare provider to 

determine a safe return-to-play protocol.382 Recent 

consensus guidelines90-92 describe an incremental 

return to activities (both academic and athletic) as the 

cornerstone of mTBI management (Table 5). A period 

of complete rest is recommended immediately after 

the injury; however, the optimal duration for that rest is 

unclear. Recent research indicates that a shorter rest 

period might be better than longer rest.383 Furthermore, 

recent work also indicates that the introduction of 

activity might help speed recovery, especially in 

individuals with prolonged symptoms.384-390 More 

research is needed to better understand the role of rest 

and activity in managing mTBI. 

General return-to-play guidelines92,391 and sport-specific 

guidelines96 have been developed; however, there 

is variability in the scope and implementation of 

RTP guidelines. In a study of college-level athletic 

trainers, use of multifaceted assessment batteries at 

baseline was rare, but multifaceted assessments during 

acute assessment and return-to-participation time points 

were more common.392 There was good agreement on 

the use of graded return-to-exercise protocols for return 

to participation; however, there was variation in how 

those protocols were implemented. A barrier to use of 

multifaceted baseline assessments was lack of staffing or 

funding for assessments.392

Additionally, most current consensus guidelines are based 

primarily on adult information, and more conservative 

return-to-activity protocols are likely needed for youth.393

More evidence is needed to characterize optimal returnto-play guidelines.95 Finally, while this has not been 

established scientifically, the same general return-to-play 

principles applied to organized sports are thought to be 

applicable to the recovery from non-sports TBI. 

46 
THE MANAGEMENT OF TBI IN CHILDREN

Unlike mTBI, no clear return-to-play or other recreational activity guidelines are available for moderate-to-severe TBI.394

Furthermore, activity recommendations for children who experience a severe brain injury at a very young age are 

lacking. Children with moderate-to-severe TBI often experience motor system effects that can compromise their speed 

and agility in sports and recreational activities. In general, physicians are concerned that a child’s reduced cognitive 

and motor functioning after a moderate or severe TBI creates increased injury risk, and that another injury could result 

in a more severe TBI than expected and prolong their recovery from the initial injury. Available evidence supports that 

children with an initial TBI are experiencing additional head injuries at a higher rate following initial injury care.395,396

TABLE 5 

Graduated return to play guidelines92,391 

Return to sport guidelines have also been individualized 

for specific sports.96 

REHABILITATION STAGE 

FUNCTIONAL EXERCISE 

AT EACH STAGE OF REHABILITATION 

OBJECTIVE 

AT EACH STAGE 

No activity Complete physical and cognitive rest. Recovery 

Light aerobic exercise Walking, swimming, or stationary cycling, 

keeping intensity <70% maximum predicted 

heart rate. No resistance training. 

Increase heart rate 

Sport-specific exercise Skating drills in hockey, running drills in soccer. 

No head impact activities. 

Add movement 

Non-contact training drills Progression to more complex training drills 

(e.g., passing drills in football and ice hockey). 

May start progressive resistance training. 

Exercise, coordination, 

and cognitive load 

Full contact practice Following medical clearance, may participate in 

normal training activities. 

Restore confidence and allow 

coaching staff to assess functional 

skills 

Return to play Normal game play. 

47 
REPORT TO CONGRESS

STATE-BASED SERVICES AVAILABLE TO CHILDREN WITH A TBI
 

In addition to school, there 

are federal, state and local 

programs available for 

children that can be utilized 

to help children with a TBI. 

For example, some states use the existing Intellectual/ 

Developmental Disabilities Systems to provide services 

such as rehabilitation services and in-home supports 

for children. At least 10 state TBI programs are currently 

collaborating with juvenile justice and correctional 

systems within their state to identify incarcerated youth 

with a TBI, and devise community integration plans 

once released.397 However, there is limited information 

on the reach and effectiveness of these programs for 

children with TBI. Each state and U.S. territory has a 

lead agency and coordinator for TBI services, all of 

whom are members of the National Association of State 

Head Injury Administrators (NASHIA). The types of state 

agencies designated as the lead agency varies, but 

can include Departments of Public/Community Health, 

Vocational Rehabilitation, Social Work, Mental Health 

and Addiction Services, Division of Aging, and advisory 

boards on TBI. State support of services beyond hospital 

care for TBI started in the 1980s, and was expanded 

by authorization of the TBI Act of 1996.397 Since then 

states have addressed the needs of TBI survivors 

and their families by legislation or executive orders to 

develop a service infrastructure that can include an 

advisory board, brain injury registry, designation of a 

state agency, and funding for services.397 Twenty-three 

states have TBI trust funds, designated by legislation, 

to support services for individuals of all ages with TBI. 

States also rely on the Administration for Community 

48 
THE MANAGEMENT OF TBI IN CHILDREN

 

 

 

Living (ACL/HHS) Federal TBI grant program to expand 

and improve services for individuals with a TBI using 

allocated funds to meet the needs of underserved 

populations, including children and youth with TBI. In 

addition to efforts to build infrastructure for TBI, states 

have worked to expand existing disability, health, and 

children’s programs to meet the needs of children 

with a TBI, including educator training.397 Despite 

wide variability between states in terms of service 

infrastructure and funding support for services, state 

programs have not been systematically evaluated to 

determine best practices and effectiveness. 

Preschool grants for 

children with disabilities 

This program (U.S. Department of Education, Law and 

Guidance, YEAR) provides grants to states and territories 

for special education and related services (i.e., speech, 

occupational, and physical therapies). Each state can 

determine which children with developmental disabilities 

or medical conditions to include. States must include 

school readiness and pre-literacy skills as part of each 

child’s educational program under these grants. At 5 

years of age, children enrolled in preschool special 

education receive a transition plan to school. Children 

who sustain a TBI prior to entering school are eligible 

for these programs that can offer a developmental 

evaluation, school services, and monitoring of 

development until kindergarten. Parents and healthcare 

professionals can contact the child’s neighborhood 

school to inquire about a referral to preschool services 

in their county. 

Child Find 

This program, mandated by IDEA and implemented by states, 

requires school systems and early intervention programs 

to identify, locate, and evaluate children from birth to 21 

years of age with disabilities or suspected disabilities.398

Components of Child Find include defining the target 

population (as determined by each state), screening and 

identifying children, tracking children through the referral 

process, parent and teacher training, and interagency 

coordination. Child Find provides a mechanism for identifying 

children with a TBI who might have developmental delays or 

disabilities. Healthcare providers can contact the Child Find 

program in their state to inquire about the referral processes. 

This system offers a method for children injured prior to 

school entry to receive an evaluation for potential services. 

Family supports 

Parents and caregivers are the de facto case managers 

for childhood TBI survivors across the lifespan. Families 

critically influence the management process, particularly 

because a significant portion of recovery occurs following 

hospitalization. Parents also play a pivotal role in supporting 

their child’s educational program.399,400 Families of children 

with a TBI can take advantage of the same resources 

available to parents of children with other types of 

disabilities (e.g., PACER Family-to-Family Health Information 

Centers, Parent Training and Information Centers). Some 

states offer support groups specifically for parents and 

families, such as a peer-visiting program offered by the 

Brain Injury Association of Georgia. As part of this program, 

parents whose children have experienced a TBI volunteer 

to visit parents of children with a recent TBI while their 

children are still in the hospital. The Brain Injury Association 

of America offers support groups for parents through their 

state affiliates (www.biausa.org). Brainline offers online 

information for families (www.brainline.org/caregivers). 

Some state services provide case management for families 

to assist the navigation between medical and school 

services. The effectiveness of many of these programs is 

unknown. For example, it is unclear the extent to which these 

programs benefit the broad range of families who experience 

TBI (across race, ethnicity, geography, and income levels), 

and at what point in the recovery process family support 

interventions are most beneficial. 

49 
REPORT TO CONGRESS

 

 

Health Services in Schools 

In addition to educational services, schools sometimes 

provide health services for a student who has had a 

TBI. School nurses and comprehensive healthcare 

clinics at schools provide an important system of health 

service delivery for children with a TBI. A previous survey 

estimated that 81.5% of schools had a school health 

services coordinator, and 86.3% of responding schools 

had a part-time or full-time nurse.401 In 2012, more than 

three fourths of school districts reported having policies 

that provide for administration of medications, case 

management for disabilities, CPR, first aid, identification 

for school-based management of disabilities and chronic 

health conditions, and violence prevention.402

Students with a TBI are eligible for school health services 

from both a chronic health and disability perspective. 

For such children, a school nurse can facilitate benefits 

access and case management, identify mental health 

issues, refer students to appropriate services, and 

administer medication at school. School health clinics 

can provide other services for children who are Medicaid 

eligible. Children with a TBI can be supported for medical 

services through state Medicaid funding implemented 

under IDEA, or through school-based or linked health 

clinics. Health-related services covered under an IEP 

or Individual Family Service Plan (IFSP) are subject to 

Medicaid requirements for coverage, including medical 

necessity, inclusion in an existing service category (i.e., 

physical speech and occupational therapy), adherence to 

all state and federal regulations, and being included in 

the relevant state’s Medicaid plan (Centers for Medicare 

and Medicaid Services). 

Medicaid reimbursement is not available for educational 

services and there is no Medicaid benefit entitled “School 

Health Services” or “School-Based Services.” Children 

under the age of 21, however, are entitled to the screening 

and treatment services pursuant to the mandatory federal 

benefit known as the “Early and Periodic Screening, 

Diagnosis and Treatment” (EPSDT) benefit. Services under 

this mandate include a comprehensive array of screening 

services, including a mental and physical developmental 

history, physical examination, appropriate immunizations 

according to the schedule for pediatric vaccines 

established by the Advisory Committee on Immunization 

Practices, laboratory testing, health education, and 

anticipatory guidance for both the child and caregiver. 

Children with a TBI might be eligible to receive Medicaid 

treatment services in schools if several Medicaid 

conditions are met. It is no longer the case that children 

are only able to access Medicaid coverable services if 

those services are included in an IEP/IFSP. (CMS issued 

guidance in the form of a State Medicaid Director [SMD] 

Letter, #14-006, http://www.medicaid.gov/federalpolicy-guidance/downloads/smd-medicaid-payment-forservices-provided-without-charge-free-care.pdf, which 

clarified Medicaid payment is allowed for Medicaidcovered services for Medicaid-eligible beneficiaries when 

delivered by Medicaid-qualified providers.) 

The conditions in the SMD Letter include: the individual is 

a Medicaid beneficiary; the service is a covered Medicaid 

service provided in accordance with the approved state 

plan methodologies, including coverage under the EPSDT 

benefit; the provider is a Medicaid-participating provider 

and meets all federal and/or state provider qualification 

requirements; the state plan contains a payment 

methodology for determining rates that are consistent 

with efficiency, economy and quality of care; third party 

liability requirements are met; Medicaid payment does not 

duplicate other specific payments for the same services; 

the state and provider maintain auditable documentation 

to support claims for federal financial participation; the 

state conducts appropriate financial oversight. 

50 
THE MANAGEMENT OF TBI IN CHILDREN

 

ADDRESSING THE GAPS: OPPORTUNITIES FOR ACTION TO IMPROVE 

THE CARE OF CHILDREN WITH A TBI 

THE GAPS 

SECTION IV 

It is widely recognized 

that children with a 

brain injury are underidentified for health and 

educational services61,64,65 

and under-served by existing 

supports, placing them at 

risk for poor health and 

educational outcomes. 

Children’s risk for adverse outcomes following a TBI supports 

the need for further investigation aimed at understanding 

the gaps in care and the development of approaches for 

optimal assessment, access to services, service delivery, and 

transition to adulthood. Approaches should include parent 

and caregiver support as they have been shown to have a 

critical role in a child’s recovery. This work is critical to ensure 

that children with a TBI of any severity have the best possible 

opportunity to maximize their recovery. 

In this section, we provide an overview of critical gaps in the 

field of pediatric TBI management and offer recommendations 

to address these gaps. 

51 
REPORT TO CONGRESS

Medical Management of TBI in Children
 

ACUTE MEDICAL MANAGEMENT
 

There is significant variability in the 

quality of acute care received, 

and a lack of true evidence-based 

standards for children. 

Access to comprehensive care at the time of the injury 

is especially important for children because the type 

and quality of care delivered can influence long-term 

outcomes;66 however, there is substantial variation in care 

provided. Brain Trauma Foundation Guidelines have been 

developed for comprehensive management of TBI in Level 

I and Level II trauma settings. Healthcare providers in 

trauma centers are more likely than those in other facilities 

to adhere to those guidelines, and adherence is associated 

with a reduction in the lifelong effects of TBI, including 

disability.403,404 In addition, children with TBI are twice as 

likely as adults to arrive at a hospital via private transport 

by parents or family members instead of by ambulance.405

Private transportation loses the benefit of EMS services 

and the application of 

Field Triage Guidelines 

that can facilitate a 

pathway to a trauma 35% 

center for care where About 35% 

more comprehensive of children 

care guidelines treated for TBI apply.405 There are 

inconsistences in TBI aren’t treated 

assessment and in the initially at a 

comprehensiveness trauma center. 

of discharge 

recommendations for all severity levels of TBI. Children 

treated at pediatric trauma centers have significantly better 

outcomes than those treated at adult trauma centers.66

However, children are more frequently (34.9%) not treated 

initially at a trauma center, relative to other age groups,405

suggesting that they may be less likely to receive timely and 

optimal acute care soon after injury. 

Follow-up after emergency 

department care is inconsistent. 

Most children with TBI are discharged to home following 

initial injury care at the ED,68 with rates of hospitalization 

decreasing in recent years.1 Some studies show that the 

rate of follow-up visits in the year after TBI, particularly to 

children’s primary healthcare providers (e.g., pediatricians), 

is low (37-40%), suggesting a lack of coordinated follow-up 

care.69,406 Currently, there are no formal systems by which 

the health of children with TBI can be monitored over time. 

Further, there has been little research describing the typical 

course of long-term medical management of children with 

mild or moderate TBIs who are seen in pediatrician offices 

or specialty clinics. Due to the range of injury severity and 

the complex nature of TBI in children, individualized care 

is needed, but uniform standards of providing optimal care 

are not practiced in all healthcare locations. 

Access to healthcare after 

TBI is inconsistent. 

There is significant variability in healthcare coverage for 

services after initial injury treatment for children, and 

the type of insurance coverage contributes to the level of 

available care.342,343 Some states also have brain injury 

waivers or trust funds that offer additional resources for 

children. In addition, school-based health clinics and 

Medicaid practices for covering children in the schools can 

address some of the coverage discrepancies, especially 

for children in rural areas. Telemedicine is a promising 

practice that can potentially address the management of 

health and behavioral issues after the injury diagnosis.407,408

In 2010, the Patient Protection and Affordable Care Act 

(ACA) included provisions to extend dependent healthcare 

coverage for children on their parents’ plans until the age of 

26, extending benefits into an age group that had a relatively 

low level of coverage.409 This is a key period of transition for 

those with a TBI from pediatric to adult healthcare.409,410

52 
THE MANAGEMENT OF TBI IN CHILDREN

 

Clinical decision support tools 

are used inconsistently. 

Within electronic health record (EHR) systems, clinical 

decision support tools can be made readily available to aid 

clinicians in diagnosing and managing TBI.411 For example, 

these EHR modules can provide clinicians with a consistent 

set of TBI diagnostic questions, and provide clinicallyvalidated discharge instructions.411 Despite the promise 

of these tools in increasing the consistency of care, their 

availability is inconsistent, and the content is variable. 

Further evaluation is needed to better understand the 

usefulness of these tools. 

LONG-TERM MEDICAL 

MANAGEMENT 

There is a lack of consideration of TBI 

as a chronic disease in children. 

Recognition of moderate and severe TBI as a chronic disease 

is a recent development in adults,142 but that recognition has 

not extended to the ways children with a TBI are managed 

over time. Although TBI meets the criteria for the Children 

with Special Healthcare Needs (CSHCN) program,357

and aligns with criteria for a chronic health condition in 

childhood,412 research studies have not identified the most 

effective long-term medical management strategies for 

children, regardless of TBI severity. Care standards that 

identify the optimal care continuum are limited, and those 

that are available are not used in all healthcare settings 

across the country. Research on the effectiveness of 

existing standards is sparse. Specifically, there is a poor 

understanding about the contribution of healthcare and 

school services to children’s long-term outcomes.2

Rehabilitation services are not 

consistently available, and there is 

variability in service quality. 

Frequently, children who need pediatric rehabilitation 

services do not receive them. For children who are 

hospitalized, there is significant variation between hospitals 

in the proportion of children referred to rehabilitation 

services during the course of the hospital admission.413

In a cohort of hospitalized 

children with a TBI who were 

admitted to the ICU and survived 

until hospital discharge, only 

41% received a physical or 

occupational therapy evaluation 

during the acute phase of care 

(median time 5 days postadmission), and only 26% 

received a speech or swallowing 

evaluation (median time 7 days 

post-admission).413

41% 

RECEIVED PHYSICIAL 

THERAPY EVALUATION 

26% 

RECEIVED A SPEECH OR 

SWALLOWING EVALUATION 

53 
REPORT TO CONGRESS

 

The length of time to referral 

for additional services in 

these studies indicates that 

children who are hospitalized 

for only 1-2 days are unlikely 

to receive an assessment for 

additional services during 

their hospital stay. 

Another important factor is the degree to which parents 

recognize the need for therapy and educational services 

after their child is discharged from acute medical 

care.62,69,414 Since parents are often the conduit to the 

receipt of care for their children, this lack of recognition can 

result in needed care not being received. Finally, whether 

a child receives long-term medical rehabilitation services 

often hinges on the availability of financial resources, 

particularly insurance coverage, to pay for care. Similarly, 

admission to inpatient rehabilitation is also influenced by 

health insurance status; only 1.5% of uninsured children 

are discharged from the hospital to inpatient rehabilitation, 

compared to 4% of children with private insurance.68

Another hindrance to optimal care is the significant 

variability in the services provided during inpatient 

rehabilitation, even among those who are admitted. For 

example, in a national sample of children’s rehabilitation 

facilities, Rivara et al.415 found substantial variation in 

the degree to which patients received recommended 

care. Using a measurement tool314 that assesses how 

well a children’s rehabilitation facility provides care 

across seven domains (e.g., general management, familycentered care, cognition and communication, motor skills, 

neuropsychological assessment and social skills, school 

re-entry, and community integration), they found that only 5 

of 9 institutions scored greater than 50% on implementing 

recommended care indicators across key management 

domains in their programs, and only one institution scored 

above 70%.314 This variability could result in part from a 

lack of agreement about key elements of recommended 

care, and could also reflect a lack of standardization of 

care across personnel.314

The Commission on Accreditation of Rehabilitation 

Facilities (CARF) is an independent, nonprofit accreditor 

of rehabilitation programs. Programs that seek CARF 

accreditation receive assistance and monitoring in 

offering high quality services based on recognized 

organizational and program standards (www.carf.org). 

CARF-certified inpatient rehabilitation units that admit only 

children did better than other facilities in the cognitive, 

neuropsychological, and school reentry domains.314 CARF 

certification thus offers a mechanism for monitoring the 

quality indicators of children’s inpatient rehabilitation, 

especially during the transition from the healthcare system 

to school. However, CARF or rehabilitation certification is 

not required; more consistent certification of facilities could 

help reduce the variation in quality. 

There are frequently unmet needs 

after hospital discharge. 

In the first year after an injury, a substantial portion of 

children with a moderate-to-severe TBI have unmet or 

unrecognized healthcare needs.69 The unmet healthcare 

need most frequently reported by parents is cognitive 

services for their child. Parents most frequently reported 

an unmet need at 12 months post-injury because of a 

lack of physician recommendation, lack of provision by 

the school, or expenses.69 Although outpatient follow-up 

for children with TBI can occur in a variety of settings 

depending on local resources, Slomine et al.69 found that 

many children did not visit a healthcare provider in the year 

following their injury. 

54 
THE MANAGEMENT OF TBI IN CHILDREN

The medical home concept is not 

implemented consistently in TBI care. 

The utilization of a medical 

home, a place for routine 

medical care that also 

takes into account families’ 

input, needs, and situation 

(i.e., family-centered care), 

is critical for children with 

special healthcare needs.416 

Patients with chronic health conditions who have a 

medical home are more likely than those who do not 

to have consistent medical care and family support, 

resulting in fewer unmet needs and a planned transition 

to adult healthcare.416,417

Many states have a lead agency for TBI397 that can cover 

services, support advocacy efforts, and in some cases, 

administer a trust fund for expenses related to the TBI. 

Similar to medical home services, a small number of 

states also offer state-based case management services 

for individuals with a TBI. As an example, the state of 

Alabama’s Department of Rehabilitation Services provides 

coordinators specifically trained to work with families 

enrolled in their Passages Program (www.rehab.alabama. 

gov/individuals-and-families/vocational-rehabilitationservice-general/traumatic-brain-injury-program/childrenyouth-and-traumatic-brain-injury), a model for long-term 

care that offers individualized, family-centered care 

coordination between hospitals and schools, as well as 

connections to community resources. However, programs 

similar to these are not consistently available within states, 

further contributing to the variation across states in the 

availability of services. 

55 
REPORT TO CONGRESS

FAMILY SUPPORT AND TRAINING
 

Families experience significant stress 

after an injury. 

The effects of a TBI often give rise to severe familial 

stress.301 Unlike parents of children with developmental 

health conditions who experience their child’s symptoms 

and disability from birth or infancy, parents of children 

with a TBI may face a sudden, unexpected alteration in 

their child’s health, development, and behavior, as well 

as their family routine. After the TBI, families must come 

to terms with the changes in their child’s functioning and, 

in the case of more severe injuries, the need to provide 

increased levels of care due to the child’s physical and 

cognitive disabilities.418

Because so much of the recovery 

process happens after the child 

leaves the medical setting, 

families play a critical role in 

rehabilitation. A significant body 

of research has documented that 

the relationship between caregiver 

and child functioning is reciprocal: 

parental distress and depression, 

maladaptive parenting strategies, 

and critical and directive parent–child 

interactions contribute to poor child 

outcomes,20,45,419 and child behavior 

problems contribute to caregiver 

burden and distress.259,293,420

These findings provide strong evidence for the value 

of targeting supports to family members to promote 

positive child outcomes. A variety of promising practices 

in the area of family support and training have been 

tested in small studies; however, these practices are 

not widely implemented. 

Few parents understand the potential for a TBI of any 

severity level to become a chronic condition, nor are they 

aware of the pathways to care beyond initial medical 

services. Most studies to-date have examined parent 

response following moderate-to-severe TBI. Findings from 

those reports indicate that a parent’s experience with the 

healthcare system at the time of injury can significantly 

impact their adjustment and understanding of what to 

expect from their child.70,72 At the time of injury, parents 

may report initial relief that their child survived the injury, 

but they are unclear about what to expect in terms of 

recovery and need for services.72 During initial care, 

healthcare providers often use terms and language that 

parents do not understand. One study of the parents of 

children with severe TBI found that parents did not perceive 

their child’s healthcare providers were managing the TBI in 

the context of the broader health and function of the child 

and the family.72 The suddenness of a TBI forces parents 

into multiple roles, including the role of advocate for their 

child in the healthcare and school settings. However, 

many parents are not given the information they need 

to understand the long-term trajectory of recovery or the 

options available to get systematic support in dealing 

with their new reality.70-72 Caring for their child at the 

time of injury can require a leave of absence from work, 

and disruption in income. When children return to their 

communities, the need for support and information grows 

as parents become increasingly aware of their child’s 

difficulties, and how that impacts the entire family.72

Parents of children with mTBI might also experience a 

disruption in their lives through additional healthcare 

appointments to manage the effects of the injury. All 

parents of children with a TBI face additional stressors 

when their child returns to school. At school, they often 

encounter a lack of understanding about the effects of 

the injury, and find that school services are not suitable 

for a student who has experienced a TBI in the midst of 

development.73 Finally, more research is needed to better 

understand the role of family stress, as well as family 

resilience, on long term outcomes for children with a TBI. 

56 
THE MANAGEMENT OF TBI IN CHILDREN

Education provided to families 

after a TBI is insufficient. 

Providing parents with 

information about TBI can 

alleviate parental stress.421,422 

Most children who experience 

mTBI will recover fully within 

several weeks, and will need 

only short-term supports 

at school. 

However, especially for high school students, the symptoms 

associated with mTBI, even if they only last several weeks, 

can have a significant effect on school performance. 

Some cognitive, behavioral, and social issues emerge 

over time following a TBI, and parents report a lack of 

information about what to monitor.423 Current evidence 

suggests that for many students with a TBI across the injury 

severity spectrum, the lack of connection between the 

healthcare and educational systems leads to poor tracking 

of child educational needs.2,111,414 At the time of injury and 

intermittently throughout care pathways, it is important 

for parents to receive information about: 1) keeping a 

personal health record with information about the child’s 

injury, medical visits, and care recommendations; 2) being 

watchful for signs and symptoms of brain injury that can 

emerge over time; 3) communicating with their child’s 

school about the injury and the need for monitoring in 

the school setting; and 4) tracking the number of brain 

injuries across the child’s lifespan. A variety of web and 

text-based materials have been developed specifically for 

parents of children with a TBI. CDC’s HEADS UP initiative 

(www.cdc.gov/headsup/youthsports) offers educational 

resources geared toward parents of children with mTBI,424

including a list of the signs and symptoms of mTBI, and 

information about how to manage a suspected mTBI in 

coordination with medical and educational professionals. 

Brain injury advocacy groups (e.g., Brain Injury Association 

of America, United States Brain Injury Alliance) also offer 

current information for families, and a variety of web-based 

materials that are tailored to parents of children with a 

TBI (e.g., Brainline Kids). However, the impact of these 

education programs has not been evaluated thoroughly, 

and they are not implemented widely or consistently. 

Parental support and training 

is lacking. 

There is limited research on how best to support parents 

whose child experiences a TBI. Parents who participate 

in parent training find it helpful,425 with skills-based 

training in stress management resulting in reductions in 

parental depression and anxiety.426 Support groups and 

peer mentoring can also provide support.427 In the school 

context, findings from a preliminary study with parents of 

children with a TBI suggest that parent advocacy training 

can lead to improved communication skills, which can then 

positively contribute to parent–teacher interactions.428

Research based on individual-level data suggests that paid 

family leave, which allows new mothers to delay their return 

to the workforce, is associated with positive parental and 

child outcomes and reduces family stress by improving 

family income.429 Studies are needed to determine if 

extending those benefits to families with a TBI can reduce 

their stress and burden following the injury. 

Family-focused therapy programs 

are under-utilized. 

One of the few evidence-based models of comprehensive 

support for families of children with a TBI is problemsolving therapy (PST). Over a series of sessions, families 

receive training in cognitive reframing and staying positive, 

step-by-step problem solving, and family communication 

skills, coupled with education about the common cognitive 

and behavioral consequences of brain injury and strategies 

for responding to them. A series of randomized clinical 

trials has demonstrated the efficacy of both face-to-face 

and online family PST, providing compelling support for 

its feasibility and efficacy as an approach for improving 

both caregiver and child outcomes following a TBI.430-432

Interventions focusing exclusively on training parents in 

positive parenting skills have also demonstrated improved 

child behavior.433-436

57 
OPPORTUNITIES FOR ACTION 

Opportunities for Action: Enhancing Healthcare Services to 

Improve the Management of TBI in Children 

At the time of the injury visit 

•	 Healthcare providers assessing TBI can consistently inquire about the child’s medical history 

and family circumstances, and consider these factors in treatment planning. Providers can advise parents to maintain a record of their child’s TBI history to complement data in the child’s 

medical record. 

•	 Healthcare providers can offer guidance and written information to caregivers about the types of 

healthcare, state, and school services that are available for their children after a TBI. Healthcare 

providers should encourage caregivers of children with a TBI to remain with a “medical home,” 

or consistent primary care provider, across the child’s lifespan to facilitate care that is more 

comprehensive and monitoring. 

Opportunities for post-injury services 

•	 Systematic examination of healthcare-to-school transition programs and practices is needed by 

educators and healthcare providers to inform the field about best practices. 

•	 Hospital systems and healthcare providers can work to optimize and streamline delivery of 

post-acute care, rehabilitation, and community services for children with a TBI and their families. 

Adoption of quality care standards (e.g., The Commission on Accreditation of Rehabilitation 

Facilities, (CARF), an independent nonprofit accreditor of health and human services) can 

facilitate improvement of service delivery. Existing networks, such as Child Find, a state-based 

reporting system for locating and assessing children suspected of needing specialized school 

services can be utilized to address services across the continuum of care. 

Systems opportunities for clinical decision making tools 

• Clinical decision support tools are promising, but need wider use and evaluation to demonstrate 

their utility and effectiveness. 

58 REPORT TO CONGRESS 
THE MANAGEMENT OF TBI IN CHILDREN

RETURN TO SCHOOL
 

Prior to injury, most students 

are enrolled in regular 

education.437 Many students 

who sustain a TBI will need 

post-injury support at school. 

Students with mTBI generally need informal support 

specific to their symptoms during recovery.67,74,75 Students 

with mTBI with significant symptoms, and students with 

more significant injuries, often need formalized support 

(i.e., section 504, IEP). 

There is frequently poor coordination of services at the 

school level.61 Best practice guidelines suggest that 

each school or local education region should have a TBI 

Management Team that can create and implement an 

appropriate education plan to support students with a 

TBI.75 The TBI Management Team, with a designated 

leader, can assist with the medical–educational 

transition, oversee implementation of academic supports, 

and provide ongoing monitoring of student progress. The 

school nurse is the recognized healthcare provider at 

school, and can assist with this process. While there are 

a number of local efforts aimed at addressing this issue, 

state-wide TBI Management Teams are in place in only 

two states. In Pennsylvania, school-based Concussion 

Management Teams support both student athletes and 

non-athletes who are returning to the demands of school 

while recovering from TBI. These teams partner with 

regional consultants, who are available to schools as an 

additional layer of more intensive student mTBI support, 

consultation, and training as needed.437 In Oregon, 

regional consultants often provide this type of support to 

any district serving a student with a TBI. 

59 
REPORT TO CONGRESS

 

There is often a lack of 

communication between healthcare 

and educational systems. 

Many students return to school following an injury 

without any communication between the medical and 

educational systems. In a study examining the return to 

school experiences of children who had been hospitalized 

overnight for a TBI, there was no communication between 

the hospital and school for approximately half of the 

children.2,76 Preschoolers typically leave medical care 

without any connection to post-injury services because they 

are not yet enrolled in school.77 The disconnect between 

healthcare and educational systems can influence whether 

children receive any behavioral, academic, or cognitive 

services in school.73,438 Although parents can assist with 

the transition from hospital to school, they might not fully 

understand the academic and behavioral challenges their 

child experiences at school, and they often have an overly 

optimistic view of the student’s recovery that influences 

their decision-making and the amount of information they 

provide to educators.62

Students who receive 

inpatient rehabilitation 4% 

services often have a Only about 4% 

team of professionals of children who 

to support them and are hospitalized their families through 

the transition back to for a TBI receive 

school. However, one inpatient 

study in 2014 found rehabilitation. 

that only approximately 

4% of children who are hospitalized for TBI receive 

inpatient rehabilitation.314 Moreover, substantial variation 

exists among pediatric rehabilitation programs in the 

preparation for return to school.439 Students with mTBI 

often do not receive any school accommodations despite 

recommendations that accommodations be made 

available for several weeks or months post-injury.440

As a consequence, both parents and school personnel 

can become frustrated and discouraged by children’s 

continuing difficulties and the disruption to their 

normative development.441

School nurses can play a key role in the hospitalto-school transition and can serve as a liaison 

between school and a child’s medical home. 

However, school nurse-to-student ratios 

vary drastically from state to state. Only 17 

states have ratios that fall within the national 

recommendation of 1 nurse per 750 students.442 

Several hospital-to-school transition models exist for 

students with mTBI67,443,444 and those with more significant 

brain injuries.89,445 In Oregon and Pennsylvania, regional 

TBI consultants provide a linkage from the hospital to the 

school setting. In those states, a medical professional can 

contact either the state coordinator or a local consultant 

to facilitate the return to school process. To date, there 

has been no systematic evaluation of any return to school 

models. CDC is currently examining a range of promising 

programs that provide a healthcare-to-school linkage to 

better understand the processes that are optimal 

in ensuring children with a TBI are monitored after 

they return to school and receive appropriate 

accommodations and/or services. 

Injuries may be forgotten over time. 

Because cognitive, behavioral, and mental health 

challenges related to a childhood TBI can emerge over 

subsequent stages of brain development,34,255 students 

with a TBI should be monitored over time.88,446 After the 

first year post-injury, educators are unlikely to connect 

an old TBI to current academic difficulties, and initiate 

appropriate educational support services.414 Typically, a 

student’s current teacher might not even be aware that 

the TBI occurred. Students who are identified and qualify 

for special education will be monitored as part of their IEP. 

For students with TBI who do not receive special education 

services immediately post-injury, ongoing monitoring is 

60 
THE MANAGEMENT OF TBI IN CHILDREN

critical.88,446 For example, students with a TBI might need 

additional supports when they transition to middle school, 

even if they had previously adapted well to elementary 

classrooms where demands for self-management and 

independent study are minimal. A simple red flag system 

can be implemented in any school to ensure that students 

with mild–moderate injuries are carefully monitored.447

Using the red flag system, a designated member of the 

school’s brain injury management team communicates 

regularly with the student’s teacher(s) to ask about 

medical, academic, and behavioral concerns. However, 

this type of system has not been formally evaluated, and is 

not widely implemented. 

Early intervention and special 

education services are frequently not 

accessed for young children with a TBI. 

Preschool children who experience a TBI are eligible for 

an assessment through state-run early intervention and 

preschool services in every state. Informing parents about 

these resources at the time of initial care establishes 

a follow-up pathway for health and developmental 

monitoring, which is especially important for children with a 

TBI, whose needs may change over time. 

Not all children with significant 

post-TBI needs receive special 

education services. 

The most recent special education census data indicate a 

continued, significant discrepancy between the incidence 

of TBI and the identification of children with a TBI for 

special education services. One estimate suggests that 

approximately 145,000 school-age children live with 

persistent disability following a TBI.124 However, in 2008, 

according to the U.S. Department of Education, the total 

number of students receiving special education services 

under the TBI category was 24,857,367 suggesting that 

fewer than 20% of students who likely need services 

are actually receiving them. Rates of identification for 

special education are higher among students with severe 

TBI, problem behavior, poor academic performance, and 

socioeconomic disadvantage.31,32

Another challenge is that special education identification 

rarely occurs after the first year post-injury; children who 

are not referred for special education at the time of the 

hospital–school transition are unlikely to be identified.414 It 

is possible that some children with a TBI receive services 

under different disability labels (e.g., “other health 

impaired”); however, it is unclear whether such services 

address the unique cognitive and behavioral needs of 

students with a TBI. In a recent survey, a majority of state 

special education directors reported that students with a TBI 

are not appropriately identified.448 State directors reported 

only 40% of students with a TBI were classified under the 

TBI category; students with a TBI were more often identified 

under the categories of Specific Learning Disability, Other 

Health Impairment, Emotional Disturbance, and 0thers.448

The potential for under-identification is particularly significant 

for children injured at a young age. The total number of 

children served in the Early Childhood Special Education 

program during the years 2014-2015 was 753,697, with 

only 1,106 children in the TBI category.449 The reason for the 

low number of children in educational services compared 

to those seen for care in the healthcare system is not well 

understood. It is possible that, like older students, these 

children are identified for services under a different eligibility 

category, or parents and healthcare providers may not 

understand the need for specialized support services for 

young children who experience a TBI and therefore do not 

make referrals at the time of injury care. 

The factors contributing to identification for special 

education warrant further investigation.39 It could be that 

some children do not require intensive services, that their 

families want to avoid the stigma of special education, 

or that there is limited parental understanding about the 

supports and services available at school.448 The underidentification of children affected by a TBI for special 

education services is one indicator reflecting the difficulties 

parents face in navigating the continuum of services after 

their child sustains a TBI. 

61 
REPORT TO CONGRESS

 

Traditional educational assessment 

and instructional approaches 

may be ineffective. 

Traditional assessment protocols may need to be altered 

to effectively assess the unique and changing needs of 

students with a TBI. Assessment should be ongoing with 

built-in progress monitoring so that TBI-related services can 

be appropriately modified as a student’s needs change.61,64

Further, standardized office-bound assessments might not 

provide an accurate picture of a student’s capabilities after 

a TBI.88,450 A valid and useful evaluation of these students 

should use ecologically valid assessments, such as parent 

and teacher behavior scales that measure a student’s 

performance in the classroom setting. Unfortunately, most 

schools do not implement these recommended assessment 

approaches with students with a TBI. 

The enormous variability within the population of students 

with a TBI (e.g., varying pre-injury profiles of ability, variable 

educational needs related to the nature of the brain injury, 

and post-injury medical care) calls for highly individualized 

approaches to instructional and behavioral supports in the 

classroom. Although the intent of special education law 

is to provide an individualized plan for each student with 

disabilities, in many schools, special education services are 

organized around existing programs.39 Particularly at the 

secondary level, special education is likely to be organized 

by severity of disability, with students labeled “severely 

disabled” receiving training in skills for daily living, social 

skills, and vocational skills, and students labeled “mildly 

disabled” receiving remedial instruction in basic skills, 

simplified curricula, or assistance in study skills to meet 

graduation requirements. Students with a TBI rarely fit into 

either track, which can lead to an educational program that 

does not meet the student’s unique needs.451 Moreover, 

students who perform academically at or near grade level 

following a TBI might not be eligible for special education 

services because they do not demonstrate a need for 

specially designed instruction. The inability to obtain services 

can be particularly frustrating when a high-performing 

student struggles to earn average grades after a TBI. One 

potential solution is the broader use of evidence-based 

teaching and management strategies that were developed 

for students with other types of disabilities. These have 

been shown to be effective with minor modifications for 

students with a TBI.450

RETURN TO ACTIVITY 

AND INDEPENDENCE 

Return to play guidelines and 

legislation are primarily focused on 

organized sports. 

Consensus guidelines developed for return to sports after 

mTBI represent a promising practice that can be evaluated 

and expanded to include recreational and physical fitness 

activities following a TBI of all severities. Since 2009, mTBI 

legislation addressing concerns about health risks for young 

athletes has been passed in all states. Common elements in 

the legislation include coach education, removing athletes 

with mTBI symptoms from play, and requiring healthcare 

professional approval for return to play. These policies 

provide a base of support for further management of a TBI 

and return to physical activity and sports. However, similar 

consensus guidelines have not been developed for the 

return to other recreational and physical activities outside 

of organized sports. Additionally, no guidelines have been 

developed for return to sports and other recreational and 

physical activities after a moderate-to-severe TBI in children. 

Further research focused on testing and optimizing these 

guidelines is needed. 

Effective driving assessment and 

training after TBI in children and 

teens are limited. 

Driver assessment and training are important aspects of 

rehabilitation following a pediatric TBI.452,453 A TBI can result in 

changes in cognition and reaction time, which can influence 

driving skills. Research examining driving after a TBI indicates 

that individuals who resume driving are less likely to wear 

seatbelts, are more likely to crash at night, and are at greater 

risk for multiple crashes than the general population.453,454

Age of injury is associated with multiple crashes, with 

those who experience a TBI at a younger age more likely 

62 
THE MANAGEMENT OF TBI IN CHILDREN

to be involved in multiple crashes post-TBI.454 It is unknown how many teens with 

a history of a TBI routinely receive driver assessment/training, or how teens and 

parents are advised in this area. Greater standardization of care and establishment 

of evidence in this area are needed. In addition to programs for teen driving, such 

as CDC’s Parents Are the Key program (www.cdc.gov/parentsarethekey/index.html), 

and discussions about driver safety in pediatrician offices, a rehabilitation driving 

program that includes a detailed assessment with a driving simulator and on-road 

driver training might be warranted for children and teens with a history of TBI. Some 

rehabilitation programs offer this service to newly licensed drivers as well as to adults 

who are returning to driving after a TBI. 

There is a critical need to optimize community 

engagement and participation for children after a TBI. 

Research indicates that children with a TBI are at risk for increased isolation 

and reduced social participation,10,80 as well as potential for incarceration and 

involvement with the justice system.42,131,305-307 Although the risk for children 

experiencing social isolation has been identified, little is known about interventions 

that can positively impact the trajectory for optimizing healthy lifestyles for children 

with a TBI, particularly those who are injured at a young age. A better understanding 

about long-term management of this population will inform this area. 

Greater use of technology 

holds promise in helping 

children after a TBI. 

Computer-based technology, electronic 

aides, cell phones, and apps are part 

of many rehabilitation and school 

programs for children. A recent study PLAY VIDEO 

97% 93%

USE THE 

by the PEW Research Center Internet GAMES INTERNET 

& American Life Project reports that 

97% of teens play video or computer 

games, 93% use the internet, and 75% have cellphones. One example of a 

promising use of technology in TBI management is an app-based intervention called 

Social Participation and Navigation (SPAN), which was designed to promote social 

participation in teenagers with a TBI through the combination of a smartphone app 

and weekly peer coaching with college students via Skype.455 The SPAN app provides 

a framework for developing and implementing social participation goals, provides 

reminders for implementing steps and following through, and includes a range of 

informational tips and topics to support goal achievement. Although technology 

shows great promise for children with a TBI, few studies have evaluated the program 

effectiveness of SPAN and other technology-based tools. 

USE OF
 

TECHNOLOGY IN TEENS
 

75% 

HAVE CELL
 PHONES
 

63 
OPPORTUNITIES FOR ACTION 

Opportunities for Action: Improving Children’s Return 

to School, Activity, and Independence After a TBI 

Models of care 

•	 Policies that expand support for school-based health clinics and telemedicine can be considered 

as a means to improve follow-up care after a TBI, especially in rural communities. 

•	 Guidelines for return to sports after mTBI can continue to be refined and informed based on new 

evidence. Processes devised for return to sports can be amended to cover return to all children’s 

recreational activities, and also serve as a point of reference for return to sports and recreational 

activities after a more severe TBI. 

Monitoring and service delivery 

•	 Educators and medical professionals within states can ensure that all children who return to school 

following a TBI are monitored, and that needed services or accommodations are received. 

•	 Educators and medical professionals should support the coordination of care across settings and 

providers that is centered on the comprehensive needs of children and their families. 

•	 School personnel can prominently note identified TBI history in school records, and 

monitor children during critical transition periods, such as the move from elementary to 

middle and high school. 

School transitions 

•	 Schools and state agencies can more frequently work with healthcare professionals to develop and evaluate healthcare-to-school transition processes for preschool children that better 

utilize state-level services to help with the identification and management of a TBI when these 

children begin elementary school. 

•	 Schools can monitor students as they transition from elementary to middle and then high school. 

•	 Schools can consistently work with families to identify the optimal pathway to learning (and 

subsequent high school graduation) to enhance adult outcomes for children who sustain a TBI. 

64 REPORT TO CONGRESS 
THE MANAGEMENT OF TBI IN CHILDREN

TBI CARE DURING THE TRANSITION TO ADULTHOOD
 

The transition to adult 

healthcare providers and 

to post-high school 

educational programs and 

employment is a particularly 

critical time for teens with 

a TBI. At this time, there is 

increased risk of a gap, or 

discontinuance of healthcare 

and career services. 

Support for the transition to the adult 

healthcare system is inadequate. 

Children and youth who experience a TBI at any point in 

their development can experience delayed effects and are 

particularly vulnerable to health challenges, poor postschool outcomes, and challenging career transitions as 

they move into adulthood. Researchers’ and clinicians’ 

growing understanding of the long-term health effects 

of TBI supports the notion that children with a TBI need 

support transitioning from pediatric to adult healthcare 

providers. This transition requires both teens and their 

healthcare providers to remain cognizant of the teen’s 

history of childhood TBI, and the need for ongoing 

monitoring of the potential effects. 

The transition from pediatric to adult medical care 

providers is a growing area of clinical concern among 

children with chronic health conditions.81 Research has 

demonstrated that access to (and use of) healthcare 

services declines significantly as adolescents transition 

to adult care, resulting in worse health outcomes in 

adolescents with identified health conditions.81-84 The 

pediatric literature recommends a balance between 

adolescent healthcare responsibility and parental 

involvement during the transition process in which teens 

take increasing amounts of responsibility, and parents 

become less involved over time.417,456,457 Provisions for 

the transition to adult healthcare services are core 

outcomes for the Children with Special Healthcare Needs 

(CSHCN) program. This program provides a mechanism to 

improve the healthcare transition, and to promote greater 

equality of services for those children with a TBI who are 

identified.458 Children with ongoing medical needs can 

access services, such as specialized medical and nursing 

care, therapy, family support, care coordination, equipment, 

early intervention, special education, and transportation. 

The National Alliance to Advance Adolescent Health has 

created a Got Transition Center for health care transition 

improvement through a cooperative agreement with the 

Maternal and Child Health Bureau. The center serves as a 

clearinghouse for current transition information, tools, and 

resources (www.gottransition.org). Further, it serves as a 

resource for clinicians, youth with TBI, and their families 

to improve transition practices from pediatric to adult 

health care. Youth with TBI rarely undergo a systematic 

transition process, in part because of parents/families’ and 

healthcare providers’ limited understanding of the potential 

for the chronic health effects of TBI, as well as limited 

access to CSHCN model programs. 

Youth with a TBI frequently do not 

access available programs focused 

on career transition after high 

school graduation. 

Under IDEA, transition services are mandated for all 

students with disabilities enrolled in special education, 

beginning at age 16 (www.idea.ed.gov); however, states 

mandate these services at age 14. These services include 

a comprehensive written plan to provide goals for postgraduation that include education, employment, and 

support services for students’ individual needs. Because 

many students with a TBI are not identified for special 

education, very few students with a TBI actually receive 

transition services.40 Students injured during high school 

are often allowed by their families and school systems 

to graduate with their class, rather than stay in school 

longer to take advantage of services that could advance 

65 
their long-term career development after high school.77

This contributes to a lack of preparation for many aspects 

of transition, such as career development, healthcare, 

linkage with community-based supports, and training in 

independent living skills such as personal finance and 

using public transportation. 

Very little research has examined effective approaches 

to improving the post-secondary transition of students 

with a TBI. However, there is emerging literature that 

has identified promising practices for transitioning 

youth with other disabilities. The National Secondary 

Transition Technical Assistance Center has identified 

33 practices that show evidence of improving student 

transition outcomes in youth with disabilities. These are 

categorized into 5 areas: student-focused planning, student 

development, family involvement, program structure, and 

interagency collaboration459

The Workforce Investment Opportunity Act aims to address 

the transition of youth with a TBI from high school. This 

Act requires coordination between and among agencies 

so workers and job seekers have more seamless access 

to high-quality career services, education, and training. 

The Act also requires that state vocational rehabilitation 

agencies allocate a portion of their budgets to assist youth 

with disabilities, including those with a TBI.460

The state-federal Vocational Rehabilitation (VR) program 

also provides services to individuals with actual or 

potential work disabilities.461 A recent study found that 

only one-third of individuals with a TBI know about these 

services, and only 5-6% receive state VR services.462

Intensive provision of more VR services that are tailored 

to individual needs has been associated with increased 

levels of competitive employment in transition-aged 

youth (16-25 years) with a TBI.463 VR services that best 

predicted successful employment outcomes included job 

placement, job support, job search, vocational training, 

and informational/referral services.463 Further, programs 

in place at the college level, such as Project Career at Kent 

State University, which utilize career services, technology 

interventions, and peer support are promising practices for 

supporting college graduation in students with a TBI.464

66 REPORT TO CONGRESS 

OPPORTUNITIES FOR ACTION 

Opportunities for Action: Improving the Transition 

to Adulthood for Children with a TBI 

• Models of care for children with a history of a TBI who transition from pediatric to adult 

healthcare systems need to be developed and supported within the healthcare system. 

• Evidence-based approaches supporting the transition to post-secondary education and 

employment for students with TBI need to be developed to ensure optimal adult outcomes, 

and the effectiveness of these approaches in promoting healthy lifestyles for young adults 

needs to be evaluated. 
THE MANAGEMENT OF TBI IN CHILDREN

PROFESSIONAL TRAINING FOR TBI IN CHILDREN 

TBI education is lacking for pediatric 

healthcare providers. 

Effective medical and 

educational management 

practices implemented by 

trained professionals can 

contribute to successful 

outcomes for children 

with a TBI. However, many 

healthcare providers and 

educators receive little or 

no training in childhood TBI 

recognition or management. 

Lack of training for healthcare providers leads to 

inconsistent and variable clinical assessments, 

inconsistent diagnoses, variable anticipatory guidance 

about expected recovery course, and variability in 

management decisions early and later after injury. Parents 

and children who leave the healthcare setting without 

proper instructions from trained providers will not have 

the information they need to manage injury effects across 

developmental stages if persistent symptoms occur, and 

that lack of information contributes to worse outcomes 

for children. Training for primary care and emergency 

care providers is of the utmost importance because they 

are often the initial contact for patients and their families 

and are often the only contact in rural communities.465

Currently, a paucity of formal medical training is available 

for all of the healthcare providers who typically evaluate 

and manage children and adolescents after a TBI. 

67 
REPORT TO CONGRESS

The approach to brain injury education is not standardized, and much of the available 

education focuses on mTBIs. Furthermore, medical students typically have limited 

exposure to and experience with mTBI management techniques.466 Training is typically 

integrated into clinical and didactic educational programs for many specialties, but 

variation across programs’ curricula is large. There are varying levels of training and 

varying practices across specialties that care for children with mTBI.85 Furthermore, 

development of a standardized and evidence-based curriculum is difficult because of the 

lack of robust evidence for treating this population. There is currently wide variation in the 

care provided, and the use of current consensus guidelines.467 Internet-based education 

has been effective across a broad spectrum of medical content areas 468-470 and shows 

promise for healthcare provider education in childhood TBI. The CDC’s HEADS UP (www. 

cdc.gov/headsup/index.html) program is one example of an online training program for 

healthcare providers.471 Additionally, a wide variety of organizations and institutions offer 

educational seminars and short courses to local healthcare providers. The effectiveness of 

these education and training programs has not been formally evaluated. 

Wide variability also exists in the training provided for moderate-to-severe pediatric TBI. 

Acute management training for severe TBI is integrated into emergency care, trauma 

surgery, critical care, and other acute care specialty training programs; however, there is 

variability in the educational material provided and the resources available for training. 

Training in the sub-acute and chronic care 

management of moderate-to-severe pediatric TBI 

also varies. In 2013, the Accreditation Council There are only: 

278 for Graduate Medical Education, in collaboration CERTIFIED BRAIN 

THE GAPS 

INJURY SPECIALISTS with the American Boards of Physical Medicine 

IN THE U.S. and Rehabilitation, Psychiatry, and Neurology, 

approved a competency-based accreditation and most primarily serve adults. 

program in brain injury medicine472 to promote 

the training of residents and fellows. The 

American Congress of Rehabilitation Medicine 

offers a brain injury specialist certificate through the Academy of Certified Brain Injury 

Specialists. The Commission on Accreditation of Rehabilitation Facilities (CARF) also 

provides certification for clinical programs that meet defined criteria for a brain injury 

specialty program.473 Broadly, accredited brain injury programs deliver services that focus 

on the medical, physical, cognitive, communication, psychosocial, behavioral, vocational, 

educational, accessibility, and leisure/recreational needs unique to individuals with 

an acquired brain injury.473 Currently, there are approximately 278 certified brain injury 

medicine specialists in the US, and most of them primarily serve adults.474 There is a 

paucity of healthcare providers with pediatric-specific training. For example, currently, 

there are approximately 224 board-certified pediatric rehabilitation medicine specialists 

nationwide.474 In rural areas, transportation and availability of pediatricians may be barriers 

to pediatric care. 

68 
THE MANAGEMENT OF TBI IN CHILDREN

Educators typically have limited 

TBI-specific education. 

Educators currently working in schools are frequently 

unprepared to work with students with a TBI.73 Surveys of 

speech/language pathologists,79 school psychologists,475

and educators78 reveal a limited understanding of TBI, 

suggesting inadequate preparation across professions. 

A recent survey of undergraduate general and special 

education teacher training programs in public and private 

universities across the United States revealed that TBIspecific training is minimal; most faculty in teacher 

preparation programs do not include information about 

TBI in the courses they teach.86 State directors of special 

education perceive a continued, pervasive lack of educator 

awareness about TBI as a chronic disability (e.g., educators 

who do not understand the long-term consequences of TBI, 

and parents who are unfamiliar with the characteristics of 

students with brain injury, the definitions used by schools, 

or the effects of TBI on school performance).448

Teachers, especially those in general education, have 

some basic misconceptions and knowledge gaps about 

TBI, and the effects of brain injury on students in their 

classrooms.78 All educators, both those preparing to 

become teachers and those currently teaching students, 

need effective training in methods that have been validated 

with students with a TBI, and in adapting strategies 

validated with students with other disabilities to students 

with a TBI.61,87-89 Because educators receive little training 

in brain injury in teacher preparation programs,78,86,475

several states have developed in-service training models 

to ensure that educators understand how best to support 

students with a TBI in the classroom. One such approach 

is the TBI Consulting Team model.89,445 Originally developed 

in Kansas and implemented there from 1989 to 2010, the 

goal of the model is to make a group of trained schoolbased consultants available to schools statewide to provide 

in-service training and ongoing consultation to educators of 

children with a TBI. 

Currently, several graduate programs offer coursework 

and certification in TBI focused on school psychology 

and special education (e.g., the TBI Transitional Special 

Education Certificate Training Program, University of 

Colorado TBI certificate, Hamline University TBI Certificate, 

and the TBI Master’s Program at George Washington 

University). A variety of existing online in-service training 

modules could also be used to supplement coursework 

in undergraduate teacher preparation programs (e.g., 

University of North Carolina TBI Online Curriculum, Brain 

Injury Alliance of New Jersey, and Rutgers Continuous 

Education). These programs are accessed by a very small 

minority of today’s educators. 

69 
REPORT TO CONGRESS

Opportunities for Action: Improving Professional Training for 

Those Involved in the Management of TBI in Children 

• Healthcare professionals who care for children after a TBI would benefit from more formalized 

training related to TBI diagnosis and management, both as part of their medical and nursing 

school programs, and through continuing education. 

• Enhanced training of educators in TBI management is needed within education curricula, as well 

as through the expanded use of in-service training models. 

OPPORTUNITIES FOR ACTION 

BUILDING RESEARCH TO GUIDE TBI MANAGEMENT IN CHILDREN
 

The evidence base for TBI 

management is very limited. 

Currently, most management of TBI is based on consensus 

guidelines and expert opinion.90-94 Only a few rigorous, 

systematic clinical trials have been performed.93 For 

mTBI, the most recent guidelines recommend pacing 

or gradual return to cognitive and physical activities as 

tolerated by symptoms. Implementation of those pacing 

recommendations, as the cornerstone of management 

in this population, is variable. High-quality studies are 

needed to determine the ideal duration and intensity of 

rest and the ideal time at which to introduce both cognitive 

and physical activity. There is wide variation in the use of 

medications after mTBI, with no high-level evidence for 

the use of any medication.98 Managing more prolonged 

symptoms has not been the focus of prior consensus 

statements or guidelines and is primarily based on 

consensus opinion.99 A wide range of medical, behavioral, 

physical, and other therapies is used in the management of 

mTBI, but definitive, high-level evidence-based guidelines 

do not currently exist. CDC is currently developing a 

guideline for the management of mTBI in children based 

on a systematic review of the available evidence conducted 

by a panel of pediatric mTBI experts. This guideline will 

include clinical recommendations based on the systematic 

review, and is expected to be released in 2018. 

For more severe TBI, a second edition of the guidelines 

for acute medical management has been developed.320

Those guidelines focus primarily on management 

strategies in the ICU for infants, children, and 

adolescents. Standardizing ICU treatments based on best 

practice guidelines is associated with improved outcomes 

at discharge from the ICU.336 Overall, variability remains in 

the implementation of guidelines, and research is ongoing 

to understand which management strategies are most 

effective. Currently, a National Institute of Neurological 

Disorders and Stroke (NINDS)-funded international, multisite study, Approaches and Decisions in Acute Pediatric 

TBI Trials (ADAPT), is in progress to evaluate the effects 

of acute care interventions on outcomes among children 

with severe TBI (www.adapttrial.org). Further research 

is needed to critically evaluate the guidelines, to further 

refine recommendations, and to ultimately improve care. 

70 
THE MANAGEMENT OF TBI IN CHILDREN

 

We know little about long-term 

outcomes following childhood 

brain injury. 

Currently, studies following children from the time of injury 

until early and later adulthood are significantly limited. 

It is important to better 

understand how a TBI affects 

and interacts with brain 

development and the child’s 

environment in the short 

and long-term to allow for a 

better prediction of children’s 

outcomes after the injury. 

Investigation of the impact of a TBI on development should 

include an examination of the effects of co-occurring 

childhood health conditions, TBI history, and the child’s 

family and social environment to best understand and 

identify modifiable risk and protective factors. 

One promising practice is the Traumatic Brain Injury 

Model Systems (TBIMS) program for adults; however, 

a similar pediatric program does not exist. This 

program started in 1987 and continues with support 

from the National Institute on Disability, Independent 

Living, and Rehabilitation Research (NIDLRR/ACL/ 

HHS). TBIMS’ primary mission is to provide state of 

the art care to improve outcomes among individuals 

with TBI aged 16 years and older who have received 

inpatient rehabilitation. Each of the 16 centers, as 

well as previously-funded centers, contribute follow-up 

data to the TBIMS National Database, a longitudinal 

database begun in 1988 that includes information on 

more than 15,000 individuals who were admitted for 

acute TBI inpatient rehabilitation. The TBIMS National 

Database for adults includes longitudinal information on 

demographic characteristics, pre-injury history, cause of 

injury, and level of disability, as well as long-term medical, 

social, community living, daily living, and employment 

outcomes. A similar database for children with a TBI does 

not yet exist, despite the compelling need for a better 

understanding of the long-term outcomes of children with 

mild, moderate, and severe TBI. Because very few children 

are admitted for rehabilitation, entry into the pediatric 

database would need to include multiple entry locations 

(e.g., EDs, primary care providers, specialty care providers, 

urgent care centers, and schools). On the positive side, 

schools already produce annual progress reports for children 

that include their grades and support services received, 

which provides an opportunity to collect data on an annual 

basis in order to follow children over time. 

In the past few years, several initiatives have been 

proposed to standardize data collection and increase data 

sharing (e.g., Federal Interagency TBI Research [FITBIR] 

Database) for research focused on children with TBI. In 

2012, a TBI workgroup of experts specializing in pediatric 

brain injury was formed as part of a National Institutes 

of Health (NIH) interagency effort to standardize data 

elements for children.476-478 Using a group consensus 

process, the group established a set of pediatric common 

data elements (CDEs) by identifying critical domains (e.g., 

demographics, laboratory, biomarkers, assessment/ 

treatment, academics, family/environmental, outcomes), 

measures (e.g., imaging, behavioral, and parent report), 

and structures (e.g., core, supplemental, and emerging 

elements). A challenge for this workgroup was the 

selection of measures that covered age and development 

across a child’s lifespan, with limitations in instruments 

assessing infants and toddlers. The ADAPT trial is 

currently validating some of these pediatric TBI CDEs. In 

2016, NINDS led the development of a complimentary set 

of standardized data elements for use in studies focused 

on sports-related TBI (commondataelements.ninds.nih. 

gov/SRC.aspx#tab=Data_Standards). The establishment 

of common data elements for research is a critical step 

in understanding children’s long-term outcomes. By 

encouraging the collection of common data elements, the 

ability to combine data sets and increase the effective 

sample size of studies is enhanced. Further assessment 

of these measures is indicated. 

71 
REPORT TO CONGRESS

 

Incidence estimates of TBI in 

children significantly underestimate 

the scope of the problem. 

Public health surveillance can identify how many people 

are affected by a particular health problem, whether it is 

increasing or decreasing in scale, and who should be targeted 

for intervention. Current pediatric TBI incidence estimates are 

significant underestimates as they are based on healthcare 

received in an emergency department. One study suggested 

that this may miss the 80-90% of pediatric TBIs treated in 

primary care, urgent care, and specialty care, as well as those 

that go untreated.102 At present, CDC is piloting a National 

Concussion Surveillance System as a means to fill these 

gaps and provide a better estimate of the TBI burden. Pilot 

implementation of this system will begin in 2018. If taken to 

scale following the pilot study, this system has the capacity 

to better estimate the incidence of TBI in children across the 

lifespan and at a national level. In addition, this system has 

the potential to improve our understanding of the full range of 

circumstances leading to pediatric TBI and track healthcare 

utilization and services received after a TBI. 

More research is needed to 

optimize service delivery and 

functioning after an injury. 

Evaluation of current promising practices is needed to 

identify novel treatments or approaches to care, and 

determine the best approaches to care that maximize 

children’s outcomes. Previous studies have identified 

unmet needs, but little research has been done that 

provides evidence-based guidance about how to better 

meet those needs. Contributing to the complexity of 

intervention studies is the fact that the majority of children 

do not receive long-term follow-up care in the healthcare 

system, and few are identified at school after initial injury 

care. Although some promising practices for interventions 

have been identified in small cohorts of children, a larger 

scale effort is needed. TBI is unique in children because 

it disrupts a period of typical development, rather than 

affecting the child from birth. We need to better understand 

how management following an injury can best address 

children’s and parents’ needs to promote child development 

and positive, long-term adult outcomes. Furthermore, 

we need to better understand how approaches used in 

research and other isolated settings relate to everyday 

improvements in the lives of children and their families. In 

October 2016, NIH convened TBI researchers, experts on 

brain development, clinicians who treat youth concussion, 

and patient advocates to discuss pediatric concussion. 

The deliberations addressed the state of knowledge, the 

adequacy of current diagnostic tools and treatments, 

ongoing research supported by the NIH and others, and 

feasible study designs to address major gaps in knowledge. 

CONCLUSION 

As a result of a TBI, children can experience changes in 

their health, thinking, and behavior that affect learning, 

self-regulation, and social participation, all of which 

are important in becoming a productive adult. The 

management of TBI in children is complex, and depends 

upon multiple service delivery systems that frequently do 

not provide systematic or coordinated care to ensure an 

optimal recovery.2,61,64,65 This report describes the public 

health burden of TBI in children and youth, details the 

current systems involved in the management of children 

with TBI, and identifies gaps that exist and some practices 

that hold promise in addressing those gaps. The report’s 

opportunities for action suggest tangible ways to improve 

TBI care in children in the near-term, and outlines a 

research agenda that can advance our understanding of 

TBI care in the future. 

72 
OPPORTUNITIES FOR ACTION 

Opportunities for Action: Filling Knowledge Gaps 

More research is needed in the following areas in order to improve the care of TBI in children: 

Foundational science is needed 

•	 Produce comprehensive estimates on the incidence and underlying causes of pediatric TBI, as 

well as on the use of healthcare and rehabilitation services following a TBI. CDC’s pilot National 

Concussion Surveillance System can provide initial data, but long-term surveillance is needed to 

track trends to inform prevention efforts. 

•	 Investigate the effects of a TBI experienced during particular periods of brain development on 

subsequent physical, cognitive, behavioral, and social growth and development. 

•	 Disentangle how non-TBI-related issues, such as the child’s family environment and co-occurring 

health conditions impact recovery. Identify modifiable risk and protective factors associated with 

short and long-term outcomes of a TBI. 

•	 Determine the feasibility of developing a pediatric version of the TBI Model Systems database as a 

means to better understand long-term outcomes after a pediatric TBI. 

•	 Collect national history data that will describe differential recovery trajectories across both age and 

severity that could be used for the development of personalized medical treatment. 

Science is needed to advance acute and long-term management 

of pediatric TBI 

•	 Evaluate existing healthcare-to-school transition models (i.e. return-to-learn processes). 

•	 Evaluate the efficacy of guidelines and management protocols across domains of care, including 

CDC’s forthcoming pediatric mTBI guideline. 

•	 Support clinical trials, rigorous quasi-experimental, and evaluation studies that examine 

effectiveness of healthcare, rehabilitation, and technology-assisted interventions across multiple 

settings, including inpatient, outpatient, and at school. 

THE MANAGEMENT OF TBI IN CHILDREN 73 
REPORT TO CONGRESS

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APPENDIX 

AUTHORS 

Juliet Haarbauer-Krupa, PhD 

Senior Health Scientist 

Traumatic Brain Injury Team 

Division of Unintentional Injury Prevention 

National Center for Injury Prevention and Control 

Centers for Disease Control and Prevention 

Ann Glang, PhD 

Research Professor, Director 

Center on Brain Injury Research and Training 

University of Oregon 

Eugene, OR 

Brad Kurowski, MD, MS 

Associate Professor 

Director, Brain Injury Rehabilitation Program 

Division of Physical Medicine and Rehabilitation 

Cincinnati Children’s Hospital Medical Center 

Department of Pediatrics and Neurology and 

Rehabilitation Medicine 

University of Cincinnati College of Medicine 

Cincinnati, OH 

Matt Breiding, PhD 

Traumatic Brain Injury Team Lead 

Division of Unintentional Injury Prevention 

National Center for Injury Prevention and Control 

Centers for Disease Control and Prevention 

CDC CONTRIBUTING STAFF 

Grant Baldwin, PhD, MPH 

Director 

Division of Unintentional Injury Prevention 

National Center for Injury Prevention and Control 

Centers for Disease Control and Prevention 

Tamara Haegerich, PhD 

Associate Director for Science 

Division of Unintentional Injury Prevention 

National Center for Injury Prevention and Control 

Centers for Disease Control and Prevention 

Ann Dellinger, PhD 

Branch Chief 

Home, Recreation, and Transportation Safety Branch 

Division of Unintentional Injury Prevention 

National Center for Injury Prevention and Control 

Centers for Disease Control and Prevention 

EXTERNAL REVIEWERS 

Katie Adamson 

Senior Director of Health Partnerships
 

YMCA of the USA
 

Gavin Atwood 

Chair
 

United States Brain Injury Alliance
 

Daphne Barbrow 

Head Start, Administration of Children and Families 

Gary Bedell, PhD 

Department Chair and Researcher, Rehabilitation Sciences 

Tufts University 

Michael J. Bell, MD 

Professor, Critical Care Medicine and Director 

of the Pediatric Neurocritical Care Center 

and Pediatric Neurotrauma Center
 

University of Pittsburgh Medical School
 

Laura Blackwell, PhD 

Neuropsychologist
 

Children’s Healthcare of Atlanta
 

Alison Cernich, PhD 

Director 

National Center for Medical Rehabilitation Research 

Angela Hein Ciccia, PhD, CCC-SLP 

Associate Professor, Department of 

Psychological Services
 

Case Western Reserve University
 

86 
THE MANAGEMENT OF TBI IN CHILDREN

 

Susan Connors 

President
 

Brain Injury Association of America
 

Drew Davis, MD 

Division of Pediatric Rehabilitation Medicine
 

University of Alabama
 

Brooke de Lench 

Founder and Publisher
 

MomsTeam Institute of Youth Sports Safety
 

Roberta DePompei, PhD 

Professor, Communication Disorders
 

University of Akron
 

Judy Dettmer 

Director at Brain Injury Program 

Colorado Department of Human Services; 

Chair, National Collaborative on Children’s Brain 

Injury 

Denver, Colorado 

Cindy Devore 

Parent 

Brenda Eagan Brown, Med, CBIS 

BrainSTEPS Program Coordinator 

Brain Injury School Re-Entry Consulting Program 

Blanca Enriquez, PhD 

Director 

Head Start, Administration of Children and Families 

Linda Ewing-Cobbs, PhD 

Professor of Pediatrics and Psychiatry 

and Behavioral Sciences; 

Director, Daniel L Duncan Children’s 

Neurodevelopmental Clinic 

University of Texas Health Science Center at Houston 

Molly Fuentes, MD 

Acting Assistant Professor, Center for Child Health 

Behavior and Development 

University of Washington 

Liane Geman-Wegener 

Parent 

Thomas Getchius 

Director of Clinical Practice
 

American Academy of Neurology
 

Jamshid Ghajar, MD, PhD, FACS 

President
 

Brain Trauma Foundation
 

Gerald A. Gioia, PhD 

Division Chief, Pediatric Neuropsychology 

Children’s National Health System 

Mimi Gold 

Educational Consultant 

Brain and Spinal Injury Trust Fund Commission 

Atlanta, GA 

Wayne Gordon, PhD 

Professor, Rehabilitation Medicine
 

Mt. Sinai Medical Center
 

Cynthia Hiltz 

Health Systems Coordinator
 

Minnesota and Past Board Member 

National Association of School
 

Martha Hodgesmith, JD 

Associate Director, Research & Training 

Center on Independent Living
 

University of Kansas
 

Stephen Hooper 

Associate Dean and Chair 

Department of Allied Health Sciences 

Professor of Psychiatry, Pediatrics and Education 

Carolina Institute for Developmental Disabilities 

University of North Carolina School of Medicine 

Gillian Hotz, PhD 

Director, KidZ Neuroscience Center 

Department of Neurosurgery 

University of Miami Miller School of Medicine 

87 
REPORT TO CONGRESS

Susan Kaufman, M.A., Ed.S 

Educational Specialist 

Office of Special Education Programs 

U.S. Department of Education 

Heather Keenan, MDCM, PhD 

Professor, Division of Critical Care
 

University of Utah
 

Joanne Klevens, MD, MPH 

Epidemiologist, Sexual Violence and 

Child Maltreatment Team 

Division of Violence Prevention 

Centers for Disease Control and Prevention 

Angela Lumba-Brown, MD, FAAP 

Physician
 

Department of Emergency Medicine 

Stanford University
 

Christina L. Master, MD, FAAP, CAQSM 

Pediatrician and Sports Medicine Specialist 

Children’s Hospital of Philadelphia 

Karen McAvoy, PhD 

Director, The Center for Concussion
 

Rocky Mountain Children’s Hospital
 

A. Cate Miller, PhD 

Rehabilitation Program Specialist 

National Institute on Disability, 

Independent Living and Rehabilitation Research 

Administration for Community Living 

Drew Nagele 

Executive Director
 

Beechwood NeuroRehab Center
 

Bonnie Nelson 

Educational Program Specialist 

Office for Exceptional Children 

Ohio Department of Education 

Christopher Nowinski, PhD 

Director
 

Concussion Legacy Foundation
 

Johna Register-Mihalik, PhD, LAT, ATC 

Research Scientist, Injury Prevention Center
 

The University of North Carolina at Chapel Hill
 

Fred Rivara, MD, MPH 

Professor and Vice Chair of Academic Affairs 

Department of Pediatrics; 

Editor in Chief, JAMA Pediatrics
 

University of Washington
 

Phillip D. Rumrill, PhD 

Professor and Coordinator, Rehabilitation Counseling 

Program; Director, Center for Disability Studies 

Kent State University 

Ronald Savage, EdD 

Past Chairman of the North American Brain Injury 

Society (NABIS) 

TBI Educational Consultant 

Beth Slomine, PhD, ABPP 

Co-Director Center for Brain Injury Research 

Director, Training and Neuropsychological 

Rehabilitation Services
 

Kennedy Krieger Institute
 

Gail Smith, BS, RN 

School Nurse Liaison
 

Children’s Healthcare of Atlanta
 

Marilyn Price Spivak 

Neuro Trauma Outreach Coordinator
 

Spaulding Rehabilitation Hospital
 

Stacy Suskauer, MD 

Director of the Brain Injury Program and Assistant 

Professor of Physical Medicine and Rehabilitation 

Kennedy Krieger Institute and Johns Hopkins 

University School of Medicine 

88 
THE MANAGEMENT OF TBI IN CHILDREN

 

 

Janet Tyler, PhD 

Educational Consultant
 

Colorado Department of Education
 

Els Van den Eynde, OTR/L, MBA, CBIST 

Manager, Orthopedic and Rehabilitation Services
 

Children’s Healthcare of Atlanta
 

Susan L. Vaughn 

Director of Public Policy 

National Association of State Head Injury Administrators 

Shari Wade 

Director of Research and Research Professor of 

Pediatrics
 

Cincinnati Children’s Hospital Medical Center
 

Kathy Watters 

Public Health Analyst
 

Children with Special Healthcare Needs 

Health Resources & Services Administration 

Barbara Weissman, MD 

Pediatric Neurologist, Department of Neurology
 

Emory University School of Medicine
 

Terri Winston 

President, Government Affairs
 

The Satcher Health Leadership Institute
 

Juingzhen Ginger Yang, PhD, MPH 

Principal Investigator, Center for Injury Research 

and Policy 

Nationwide Children’s Hospital
 

Keith Owen Yeates, PhD, ABPP 

Ronald and Irene Ward Chair in Pediatric Brain Injury 

Professor of Psychology 

University of Calgary 

89 
U.S. Department of Health and Human Services 

Centers for Disease Control and Prevention 

National Center for Injury Prevention and Control 

Division of Unintentional Injury Prevention 

go.usa.gov/xnvbq