Surveillance, Monitoring, and Access to Care for Children and Adults with TBIs
- How do we really know how many people experience TBIs within the US (United States) every year?
- How do we know what services they have access to?
- How do we monitor their progress or lack thereof?
We sat down with Juliet Haarbauer-Krupa, Ph.D., a Senior Health Scientist at the Division of Injury Prevention for the CDC (Centers for Disease Control), who has an extensive career in clinical TBI rehabilitation and research to find out answers to these questions.
Photo of Juliet from her CDC Bio.
Before we answer these questions, we need to understand what is public health surveillance (PHS). Simply put, PHS is the collection of information to measure and describe the hurdles people must overcome to be able to perform their daily functions. It can be done in many ways, such as
- systematic collection
- interpretation of the analysis
- implementing, and
What does this mean for you? An example of a public health surveillance is an effort from the United States Department of Agriculture, Economic Research Service, who monitors the food security of U.S. households through a national survey that is distributed each year. The survey helps the USDA understand when U.S. citizens experience food insecurity throughout the year and helps them to properly cater the US food and nutrition assistance programs to those most in need.
Knowing these details about adverse health conditions and situations helps governmental and health care agencies to:
- Prioritize public health actions
- Monitor the impact of control measures
- Identify emerging health conditions
- Identify areas of care that need to be improved
How does the CDC approach TBI surveillance in the US? We learned that for years, TBI surveillance was only captured from emergency department visits, hospitalizations, and deaths (Surveillance Reports can be found here). At the time, this was all CDC knew and were able to do, but they also recognized these estimates do not include TBIs and concussions that are treated outside of the emergency department. A few examples of where TBIs and concussion cases exist that are not collected are in pediatrician's offices, schools, or sports programs. There are people that go untreated because they just think they only have a “bump on the head.” These factors contribute to why the number of TBI cases are undercounted, making it more difficult to measure the true burden TBI has on patients, families, healthcare system, and research.
Survivors and caregivers feel this burden all too well. We know what it means to be underestimated, invisible. We all have heard from friends, family members, and providers how “good” we look. This is the mistake. The injury is inside our heads. It is invisible to an outsider looking at us. But it is real, very real. And this means the job of survivors and caregivers shifts from caregiving and healing to advocacy and awareness. Our health care system is under the impression that the services they are providing are adequate. When the truth is, they are far from enough.
When TBI survivors are misdiagnosed, they face challenges being able to access targeted, personalized care. This unintended problem places the burden on us (patients and caregivers) and highlights the importance of capturing all data, your data. Numbers drive change. The Power of Patients app, Sallie Ò empowers you to contribute your TBI symptom and SDOH [Social determinants of Health] data, to drive change for TBI survivors.
Example of a Surveillance Report from 2016/2017
Juliet mentions that the CDC recognizes that their surveillance approach can be improved. Which is why they have begun to look through other outlets and use new surveillance systems in hopes of capturing everyone. Some examples are The Traumatic Brain Injury Model Systems National Data and Statistical Center (TBINDSC) and a project called the National Concussion Surveillance System. This program is calling people across the country to ask them about whether they have experienced a concussion or think that they have. This approach aims to find individuals who may not have had an actual concussion diagnosis or sought out care for a head injury but felt as though they had experienced one. Juliet points out how important this effort is for both children and adults because determining an accurate number of how many Americans experience a TBI or concussion each year, and what caused them, can help equip leaders within the communities to:
- Efficiently monitor trends
- Provide insight to health providers and hospitals
- Learn why individuals didn’t or couldn’t seek care
CDCs Recommendations for Rehab
Understanding the community’s burden of TBI is only the first step. TBI burdens are not only long-term behavioral and cognitive deficits. They can also be:
- Financial burden caused by increased health care or the inability to return to work
- Increased responsibility for family or friends, and
- diminished quality of life.
Community leaders must fully understand the depth and breadth of this widespread issue to be able to create an effective plan so individuals can access appropriate rehabilitation services. Juliet iterates that the CDCs approach is to always “ensure that individuals who experience TBI get access to care, based on their needs, no matter what.” Whether the care they need is simply to be evaluated or if they require therapy, the goal is to make sure their needs are met.
But what if the patient is a child? The burden intensifies.
Children with TBIs
Trends that emerge from surveillance and monitoring, drive research. These trends often highlight areas of health disparity or underserved populations. As pointed out by Juliet, one alarmingly underserved population within the brain injury space is children. Juliet explained how important it is that their injuries are not overlooked.
Most childhood TBI surveillance tools have a question asking parents whether their “child has ever been diagnosed with a TBI”. Juliet and her colleagues are working on changing that to ask questions to “have you ever suspected your child has experienced head trauma?”. There are many instances where children aren’t taken to a health care professional to receive a diagnosis. Juliet mentions that CDC currently has a Heads UP campaign that provides information to healthcare providers, parents, educators, coaches and athletic trainers about how to recognize a concussion in children and adolescents. The TBI team plans to continue to develop messaging to prevent Concussion and TBI as well as ensure individuals who experience this injury receive monitoring and care. Sallie® offers all these features. Power of Patients agrees with the CDC and has released a caregiver/parent feature to invite any provider to “see” their child’s symptoms. Our goal is to close the knowledge gap surrounding TBIs and raise awareness.
Heads Up Banner from their website.
Caring for a child is a full-time job. Caring for a child that has trouble communicating their symptoms is confounded when a parent may not even understand what their child is experiencing. All these factors may cause undue strain, stress, emotional, financial, and physical tolls on parents. SallieÒ is a FREE app, that is fast and easy allowing parents and caregivers to track their child and provide charts that can accelerate the proper care your child may need.
The Future of Research
Juliet has high hopes and expectations for future research in TBI, for both adults and children. She has three areas she hopes to see evolve soon:
- Fully understanding the burden of TBI.
- Juliet mentions that, although the CDC has access to hospital databases, we need to understand the burden for individuals who experience a TBI and do not seek care and of those who are experience long term effects of TBI.
- Expand the development of TBI biomarkers. (Biomarkers are a biological molecule that is found within the body, in fluids or tissues, that can be measured to see a sign of a normal or abnormal process for a condition [a marker] of a disease.)
- Juliet emphasizes how important this will be for individuals who have mild TBIs, as they may be experiencing some symptoms with no explanation, and the presence of a biomarker could lead them to a diagnosis and targeted recovery plan.
- Increase longitudinal studies on children.
- Juliet mentions that we do not know enough about the long-term effects of early childhood head trauma, and whether these individuals go on to lead successful and happy lives as adults.
There has recently been a shift towards how significant the long-term negative effects of TBI are and as mentioned above more longitudinal studies will help us understand the long-term impact upon TBI survivors. These trends emphasize the seriousness of TBI chronicity. TBI chronicity is the long-term, constantly recurring, incurable, immedicable conditions that develop because no one fully understands the long-term impact a head injury can cause. The graphic below depicts the frightening statistics from a head injury for people receiving inpatient care. These statistics do not include those people that are 2.4 times more likely to die by suicide because they cannot access proper care.
Statistics from the CDCs “Moderate to Severe Traumatic Brain Injury is a Lifelong Condition” PDF.
Understanding the complex and complete makeup of every person's brain injury and managing their rehabilitation like existing chronic care management programs do, is the first step to improving health care plans, government, and community service decisions. Recognizing TBI as a chronic health condition will help future policies to proactively address lifelong disease management of TBIs.
There, Every Step of The Way
Sallie® is there, every step of the way. Whether you have just experienced a head injury, or if you are 20 years out, Sallie® provides you a space to track and monitor how you are feeling, and changes in your TBI symptoms. Sallie® is also available for caregivers and parents to help monitor changes in their child or other individuals that they are caring for. With personalized generated data reports, suspicions about changes in behavior can be confirmed. These reports can be electronically sent to a health care provider addressing your concerns remotely.