Disclaimer: The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
As described in Dr. DePompei’s introduction, the Galveston Brain Injury Conference selected the themes of CDC’s Report to Congress (RTC) as the organizing structure for discussion and project development for 2019-2020 meeting on Traumatic Brain Injury in Children. The Traumatic Brain Injury Act (TBI) of 2014 provided the impetus for the RTC as it directed the CDC, in consultation with the National Institutes of Health, to conduct a review of scientific evidence related to brain injury management in children and submit a report to Congress. The report was created by reviewing the relevant research as well as through input provided by TBI experts related to the critical gaps in: recognizing TBI in children; monitoring their recovery and symptoms over time; and accessing care when needed. Currently, management of TBI in children requires parents to navigate two systems of care (healthcare and school) that are not systematically connected. The report describes the public health burden of TBI in children and youth, including the range of outcomes that may be experienced following a TBI. In addition, the report describes current systems involved in the management of children with TBI, identifies gaps that exist in pediatric TBI care, and delineates practices that hold promise in addressing those gaps. Finally, recommendations are offered that suggest ways to improve TBI care in children as well as how we might advance TBI care in the future.
The RTC described why improving the management of TBI in children is an important public health issue. Children have the highest rate of emergency department visits for TBI of all age groups (CDC RTC 2018). In addition, TBI affects children differently than adults. A brain injury of any severity can occur at one or multiple times during childhood.
Each injury has the potential to disrupt a child’s developmental trajectory. 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 contribute to becoming productive adults. Although most children recover well physically, they can experience changes in behavior and cognition that may not be recognized immediately. Post-TBI health problems and behavioral changes can emerge over time and are associated with significant financial and social challenges for adults having sustained a TBI as a child. The management of TBI in children is complex and depends upon multiple service delivery systems (e.g., medical and educational) that frequently do not provide systematic or coordinated care to ensure optimal outcomes.
The scientific literature has noted that there is inconsistency in the quality of diagnostic practices, likely due to inconsistent training among clinicians. The quality of diagnostic practices may vary by geography and the healthcare setting (e.g., emergency departments, urgent care, specialty clinics or pediatrician offices). How children are monitored over time and the availability of care may also vary depending on the location and availability of care. The RTC identifies recommendations focused on these key areas and provided a structure for The Galveston Brain Injury Conference discussion and the development of projects and products that can result in action to improve outcomes for children who experience a TBI. The three areas addressed are as follows:
1. Recognize: Children with TBI may be identified and managed within two distinct models of care: Healthcare settings and schools. In healthcare settings, diagnosis as well as education about the TBI and provision of discharge instructions show much variation across the United States based on the setting where the child is seen for an assessment (e.g. Emergency Department, Urgent Care, Pediatrician or Specialty Clinic), physician training, and availability of clinical decision support tools. Abusive Head Trauma is particularly prevalent in young children but not readily screened for in healthcare settings. In schools, parent report is often the first step to notify educators about the injury; however, numerous studies report that children are under-identified for educational services and underserved by existing supports for children with health and learning needs. Guidelines for diagnosis and management in healthcare settings as well as clear communication when the child returns to school are needed.
2. Monitor: After children are diagnosed with a TBI, systematic monitoring of their symptoms and potential effects on learning and behavior is not consistently conducted, especially for children with mild TBI. Education and training of healthcare professionals on the importance of providing discharge instructions for return to school is needed. In additions, guidance for educational personal about how best to monitor a child returning to school, and throughout their school career, is currently variable based on state and local jurisdictions. As children with TBI transition to adulthood, there are not systematic efforts to track or support this passage in either healthcare or school settings. Addressing these gaps is essential to ensure optimal adult outcomes for children who experience a TBI.
3. Care: Over the last several years there has been a proliferation of research that describes children’s brain development, outcomes from TBI, and both service needs and unmet needs following TBI. 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. For example, although it has been documented that children who receive inpatient rehabilitation are more likely to have a return to school plan; however, one research study found that only 4% of children hospitalized after TBI receive inpatient rehabilitation. Further, service needs in school can arise over time and currently there is not a systematic process to ensure children receive care as these needs emerge. This is a critical area for improvement.
The RTC provides a summary of current research and practices in the field and highlights gaps in identification and management of this health condition in children, as well as suggested opportunities for action. The Galveston Brain Injury Conference provides an excellent opportunity for stakeholders in the field of pediatric TBI to devise courses of action identified in the report and move the field forward to improve care for children and support optimal outcomes.
Recognizing TBI as a health condition, Monitoring the effects of the TBI on children’s health, development and adult outcomes and ensuring access to best practices of Care is are all significant areas to be addressed by the Galveston Brain Injury Conference on Pediatric TBI. Subsequent articles within this special issue of Brain Injury Professional describe each of these themes in greater detail and the activities identified during the first-year meeting held in May 2019 to improve these areas of pediatric TBI care.
Centers for Disease Control and Prevention. Report to Congress: The Management of Traumatic Brain Injury in Children. Atlanta, GA, National Center for Injury Prevention and Control: Division of Unintentional Injury Prevention, 2018.
Juliet Haarbauer-Krupa, PhD, is a Senior Health Scientist on the Traumatic Brain Injury (TBI) Team in the Division of Unintentional Injury Prevention (DUIP) at the Injury Center. She is project lead on the Report to Congress on the Management of Traumatic Brain Injury in Children and the Return to School Projects in the division. Dr. Haarbauer-Krupa has over 30 years of experience in the field of Traumatic Brain Injury that encompasses both clinical and research work. She currently holds an adjunct position in the Department of Pediatrics, Emory University School of Medicine.