The US Centers for Disease Control and Prevention (CDC) sees traumatic brain injury (TBI) in children as a public health problem with a ripple effect—not only are children receiving inconsistent care at the time of injury, but variation in rehabilitation and recovery approaches can lead to disability that lasts through adulthood.
The CDC laid out its case in a recent report to Congress that identified what it believes are the most glaring gaps in current treatment for pediatric TBI. "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 optimal recovery," the report states. "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."
The agency hopes to address this issue through a "first-ever evidence-based clinical guideline on the diagnosis and management of mild TBI among children and adolescents" now in development. The CDC believes those guidelines could help to address gaps in the management of TBI in children, but it says those guidelines alone won't be enough to fix the problems in the current state of treatment.
The report, which the CDC describes as a "call to action," identifies 8 major areas in need of improvement:
Access to comprehensive care at the time of injury. "There is substantial variation in care among the sites where children are seen for acute injury care," the report states. "Not only are there inconsistencies in TBI assessment but also in the comprehensiveness of discharge recommendations for all severity levels of TBI."
Long-term management. The report asserts that "there are no formal systems to monitor the health of children with TBI over time" and that "frequently children who need pediatric rehabilitation services do not receive them."
Family support and training. According to the CDC, parents of children who experience TBI often find themselves thrust into a situation in which they have to take on multiple roles, including being an advocate for their child in health care and school systems. "Few parents understand the potential for a TBI of any severity level to become a chronic condition," says the report.
Return to school. "Many students who sustain a TBI will need post-injury support at school…However, children and their families often experience difficulties accessing these services," according to the report.
Return to activity. The CDC acknowledges that return-to-play guidelines have been developed for sports, but it finds a lack of similar guidelines for physical activities outside of organized sports and not much in the way of guidelines for return to activities after moderate and severe TBI.
Transition to adulthood for children with TBI. In what the CDC describes as "a particular area of concern," the report asserts that the use of health care services tends to decline as adolescents with TBI transition to adult care, with a resultant worsening of outcomes. Making matters worse, according to the report, is the tendency for public school systems to limit post-high school transition planning to only those students covered by the Individuals with Disabilities Education Act (IDEA), and the lack of any requirements for specialized education and transition services in private schools.
Professional training. "Many medical, educational, and other professionals who provide care and support for children after TBI received limited training specific to TBI recognition or management," the report states. "Lack of adequately trained health care 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."
Research. According to the CDC, "we currently know very little about long-term outcomes for children with TBI." The agency calls for high-quality studies to establish parameters for duration of rest and return to physical and cognitive activity, medication use, and the management of prolonged symptoms. "A wide range of medical, behavioral, physical, and other therapies are used in the management of [mild] TBI, but definitive, high-level evidence-based guidelines do not currently exist," the CDC writes.
The CDC estimates that in 2013, there were roughly 640,000 TBI-related emergency department visits, 18,000 TBI-related hospitalizations, and 1,500 TBI-related deaths among children 14 and younger.