Close your eyes and imagine a moment that changed your life. Try to remember where you were, what you were doing, who you were with, and even what you were wearing. But an accident occurred, something happened to your head and you are injured, forever changing your life.
Traumatic Brain Injury (TBI) and Social Determinants of Health
Traumatic Brain Injury (TBI) occurs when a sudden trauma causes damage to the brain. This can be the result of a collision with the head or neck, a piercing of brain tissue, or a complication from another health condition. This trauma can be mild or severe, but what is known about its effects is often misidentified or understudied. Those who survive a TBI can face effects that last a few days or the rest of their lives, and the National Institute of Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health is seeking fundamental information about brain injuries so that they can reduce the burden of long-term effects for people with TBI and their caregivers.
In response to a Request for Information (RFI) from NINDS on eliminating health disparities and/or inequities in neurological conditions and care by identifying social determinants of health, the Power of Patients, a TBI support and awareness organization, surveyed a small group of TBI survivors and caregivers to better understand the social determinants and/or barriers they encounter to better care. Social Determinants of Health (SDOH) are traditionally defined as the places where people exist; where they live, learn, work, play, and occupy, all of which can present health risks and adverse outcomes (Centers for Disease Control and Prevention, 2020). Because social determinants play an immense role in health and well-being, they are the key to understanding how neurological conditions, treatment, care, and service are navigated and subsequently neglected. The survey, through the influence of the RFI, sought to identify why non-traditional understandings of social determinants of health should be considered to guide future NINDS research. It is our belief that people are in some ways the experts of their health struggles, so they should be consulted to understand their barriers to recovery.
Power of Patients Survey Results
Sleep Symptoms Result
It has been made clear through our surveys that triggers and symptoms should be viewed as social determinants themselves. We found that sleep conditions were the primary and most significant health problem. Conditions were categorized as excessive sleep, poor/little sleep, fatigue, excessive exhaustion, drowsiness, and extreme yawning. In the graph below, respondents reported the following things:
84.62% of respondents experienced fatigue, 61.54% experienced poor/little sleep, 46.15% drowsiness, 38.46% excessive exhaustion, and 34.62% excessive sleep. As quality sleep is linked to healthy brain function, physical recovery, and mental health, it is important to assess how the lack of adequate sleep in a person with a TBI can affect their overall quality of life.
Emotional Symptoms Result
The second and equally significant finding was the effect of emotional problems ranging from depression to mood swings and irritability.
Seventy-six percent of survey respondents identified that they struggled with anxiety and seventy-two percent of respondents dealt with depression. Irritability, mood swings, and unexplained sadness/crying were also identified as TBIs symptoms with 64%, 64%, and 44% of respondents experiencing those symptoms, respectively. If the pattern of inadequate sleep is coupled with emotional instability where people with TBIs are struggling with decision-making processes, how does this impact their impulse control, and does this interfere with their parenting, personal health, education, employability? There is much more to consider from these findings.
Cognitive Symptoms Result
The third, but not final significant finding centers around cognitive symptoms. Approximately 88.5% of survey respondents reported having short or long-term memory loss problems as a result of having a TBI. Over three-fourths of respondents reported experiencing a lack of focus, poor concentration, and slowness in thinking and processing (76.92%, 80.77%, and 76.92% respectively).
Seventy-three percent of respondents expressed that they had trouble finding the right words, with approximately 8% having difficulty relearning vocabulary, stuttering, and developing ADHD and dyslexia. Traditional therapies for these dysfunctions are pharmaceutical drugs that suppress the central nervous symptom, which for people with TBI, can exacerbate the severity of their condition without addressing the source. This creates a disparity between medication specific to TBI disorders and pharmaceuticals that are not for TBIs, and how beneficial they actually are to people living with TBIs.
TBIs and the Medical Community
In just this survey, it is evident that although sleep is the primary problem followed by emotional dysregulation and then cognition, there needs to be a greater understanding by the medical community that TBIs are not a monolith. Conditions and recovery vary by individuals, and they need assistance navigating their way to a better quality of life. One survey respondent fittingly described this need by saying, “I am a healthcare provider who treats individuals with TBIs so I was uniquely able to find resources. My physical therapist was helpful, as were colleagues. To some extent[,] I had to figure out my own recovery anyway because individuals are so different. I am largely the same person I was and can do all of the things that I did, but some take longer, but my tolerance is lower.” One can argue that the respondent’s proximity to medical knowledge facilitated their recovery, but they still struggled to figure out their own recovery. Many people living with TBIs and their caregivers often do not have the resources to do so. We need to do better.
Our work demonstrates patterns of inequities that are grounded in a common misunderstanding of TBI effects and inconsistent care delivered by a variety of health care providers. This, in turn, fosters mismanaged health on the part of TBI survivors and their caregivers, as they struggle to navigate triggers and symptoms on their own. We reported to NINDS that TBI triggers are the root of the chronic and excessive symptoms for those who have a traumatic brain injury and there is not only a need but an urgent need to provide better education to the medical community to close this knowledge gap through a true patient-centric platform.
How You Can Get Involved
These are true disparities. We have identified patterns that show sleep is the primary problem, followed by emotional dysregulation and then cognition, and this is just the beginning. I challenge anyone person who has pulled an all-nighter to pause and reflect how well they really function on 2-3 hours of sleep; and then imagine this dysfunction every day of your life! Join Power of Patients and raise awareness of TBI symptoms and triggers. Register here https://powerofpatients.com/registration/ and share this with a TBI person or caregiver today!