Yesterday, we finished our discussion of the early stages of the National Pediatric Acquired Brain Injury Plan [PABI Plan]. I promised the readers I would focus on the concepts of "mild" traumatic brain injury and the next steps to the NABI Plan for the regional centers here in the United States.
In talking about mild traumatic brain injury, the word "mild" is merely a relative term. The clinical experience and the severity of the injury itself is not "mild". Millions of children, adolescents and young adults sustain traumatic brain injury each year and the great majority (90%) are classified as mild. Even concussions which young athletes sustain on an annual basis are a subclass of "mild" TBI. [for more information on young athletes and concussions, click here]
As we sit here today, the current status of "mild" traumatic brain injuries is, in a nutshell, one of a lack of education and awareness about the condition itself. Medical, educational, sports and recreational systems are universally under-prepared and ill-equipped to handle these injuries. There is a lack of trained responsive systems including first responders such as EMS and athletic trainers as well as primary care physicians and clinicians. There is also a lack of services in the form of emergency departments, pediatric offices as well as on the schools and playing fields themselves.
Because mild traumatic brain injury is under-recognized and under-identified, there is not only poor, but incomplete management of the injury itself. Because the injury is under-recognized and under-identified, those children would suffer an increase risk for a more serious outcome. Further, repeat concussions and/or mild traumatic brain injuries can cause cumulative injuries resulting in death (second impact syndrome), chronic traumatic encephalopathy as well as persistent symptoms and/or prolonged recovery from the post-concussive syndrome.
The National PABI Plan for mild traumatic brain injury is to develop nationwide a master plan to ensure equal assessment and treatment that includes the best practices standards, ensuring early identification of the injury, education, training of personnel systems as well as equal entry to services at all points.
The next category of care charged to the regional centers will be that of reintegration and/or long term care. As far as reintegration into the school community, there is no systematic method for connecting children and their families with services within the school and community following a traumatic brain injury. In particular, failure to identify the injury for purposes of special education, causes significant problems within the school.
Annually, 62,000 children are hospitalized for traumatic brain injury. Of those 62,000 children, approximately 19% need special education support. This means that the cumulative total kindergarten through 12th grade of children needing special education support totals nearly 150,000 children. Yet in 2005, the total recognized pediatric need for special education due to traumatic brain injury was just 23,509. In fact, many educators had acknowledged that they simply do not have a handle on this specific disability.
Why? All you have to do is look at the contributing factors to this under-identification and the poor services. Traumatic brain injury is generally defined as an invisible disability. Students may look normal or have no physical signs of disability yet their brain is functioning in an abnormal matter following trauma. Further, when children are injured at an early age, the impact may not be seen until years later as they begin missing certain developmental milestones or acting in socially or academically inappropriate ways.
Further, parental expectations are askew as there is a rapid pace to the early recovery from a traumatic brain injury [especially in children], yet this recovery typically tapers off over time. Also, there is universally poor tracking of the injury and its outcome as transitions are not well coordinated.
As part of the national PABI Plan, the Sarah Jane Brain Foundation will provide research on effective interventions which will allow services for educators and other service providers. This, in turn, will allow those educators and schools to provide services for the children and their families as well. These academic services will help transition the child on referral from acute care, rehabilitation or community agency through the academic environment and into a proper and smooth transition to adulthood.
The fifth category of care for the regional centers will include adult transition. Under the current scheme, transition to adult life following pediatric acquired brain injury would include medical, psychological and rehabilitative services such as physical therapy, occupational therapy and speech and language therapy which would be received through special education and end suddenly at age 21 with the end of school eligibility. The IEP process should mandate a transition program to support the transition from school to post secondary education or work. Further, social opportunities can be developed if acquired brain injury appropriate education is offered to community personnel and case managing is provided to the individual’s family.
The current problems with transitioning to adult life following pediatric acquired brain injury would be the following:
1. Lack of adult medical providers including primary care physicians and specialists;
2. Lack of pediatric acquired brain injury education among psychologists, psychiatrists and community mental health providers which, to date, tends not to include emotional problems causing serious psychiatric disorders in adulthood because of the transition;
3. Lack of insurance coverage for non-acute physical therapy, occupational therapy, speech and language therapy, cognitive rehabilitation or psychological treatments;
4. Extreme variability in conduct of education transition services with regard to program quality relevance from district to district and success which is quantified by functional outcomes; and
5. The lack of any opportunity for a formal social interaction by the brain injury survivor.
The main question for the reader should be, "How does the Pediatric Acquired Brain Injury Plan address the identified problems?" Currently, the PABI registry will provide an educational resource for physicians and other providers. It will also clarify the course of PABI through development including addressing the impact of PABI trauma and medications on physical systems over time. Lastly, the PABI registry will provide an integration of knowledge and practice. With regard to the PABI virtual center, the center will bridge the knowledge gap between pediatric and adult providers, will provide data collection on long term medical and health parameters and outline the effective treatments including "best practices" for young children with brain injury. Further, the virtual center will replicate all of these quality programs in every community which will reduce variability in service access due to the lack of knowledge and non-existing case management.
Tomorrow we will wrap up our look at this amazing nation-wide attempt to standardize the diagnosis and treatment of children with acquired brain injuries. We will look at the difficulties faced by families living in rural area, far away from the hospitals and treatment centers that could provide the appropriate care. We will also discuss ‘the virtual center of care"; a center focused in promoting research, advancing discovery speed to application, empowering patients as well as outreach to the community, providing anonymous and highly linked care as well as integrating data to inform public policy.