Millions of Americans suffer concussions each year, and many endure symptoms for months or years afterward. A new study shows that a majority of patients with a concussion receive no follow-up care within three months of discharge from the hospital.
Based on a sample of 831 patients sent to a top-level trauma center with a concussion, or mild traumatic brain injury (mTBI), a national collaboration of researchers found that 47 percent reported that they were given educational materials about TBI when they were discharged, and just 44 percent saw a physician or other provider within three months of their injury.
"The lack of follow-up after a concussion is concerning because these patients can suffer adverse and debilitating effects for a very long time," said Seth Seabury, a lead author of the study and director of the Keck-Schaeffer Initiative for Population Health Policy at the USC Schaeffer Center for Health Policy and Economics. "Even patients who reported experiencing significant post-concussive symptoms often failed to see a provider. This reflects a lack of awareness, among patients and providers, that their symptoms may be connected to their brain injury."
The study was published on May 25 by JAMA Network Open and listed 65 co-authors from across the United States. The research was based on data from the ongoing Transforming Research and Clinical Knowledge in Traumatic Brain Injury study, or TRACK-TBI. Supported by the National Institute of Neurological Disorders and Stroke of the NIH, the TRACK-TBI study has collected detailed information, including CT/MRI imaging, blood biospecimens and detailed clinical outcomes, for more than 2,700 brain injury patients from 18 different U.S. sites.
Most cases of traumatic brain injury are classified as a concussion, or mild traumatic brain injury. However, the term "mild" can be misleading. People can have significant post concussive symptoms, such as migraines, cognitive issues, vision loss, memory loss, emotional distress or personality disorder.
"For too many patients, concussion is being treated as a minor injury," said Geoffrey Manley, the principal investigator of the TRACK-TBI project and co-author on the study. "This is a public health crisis that is being overlooked. If physicians did not follow up on patients in the emergency department with diabetes and heart disease, there would be accusations of malpractice."
Rising public awareness of traumatic brain injury
According to the Centers for Disease Control and Prevention, an estimated 3.2 million to 5.3 million Americans live with long-term health effects of traumatic brain injury. TBI resulted in 2.8 million emergency department visits in 2013. Annual direct and indirect costs estimated at over $76 billion, according to TRACK-TBI.
In addition, TBI has affected, since 2000, nearly 380,000 active-duty service members, most of whom have had mTBI, according to the U.S. Department of Defense.
"In light of the high-profile issues with TBI around football and the military, there is increasing awareness that concussions are an important public health problem," Seabury said.
The researchers noted in the paper that persistent symptoms can be debilitating in many ways for patients. They are linked to an increase in medical expenses and -- in some cases -- job loss, homelessness and incarceration.
"The focus of concussion has been directed at a very narrow segment of the population -- football players and professional athletes," said Manley, a professor of neurosurgery at the University of California-San Francisco department of neurological surgery. "Everyone who falls off their bike, slips off their skateboard or falls down the steps needs to be aware of the potential risks of concussion."
Some patients with positive CT scans received no follow-up
For the study, USC and UCSF scientists examined data on TRACK-TBI patients aged 18 and older who were enrolled in the study between Feb. 26, 2014, and Aug. 25, 2016. The data included such medical information as CT scan results, injury characteristics and the patients' admission score on the Glasgow Coma Scale (GCS).
The GCS scores range from 3 to 15, from severe to mild, and is intended to rate the consciousness of patients who have suffered an acute brain injury. Patients in the study had GCS admission scores of 13 to 15.
The patients completed surveys about their follow-up care at two weeks and three months post-discharge. The researchers also assessed the severity of their symptoms such as headaches, dizziness, sleep issues, and other physical symptoms that may occur after a concussion.
The researchers found a gap in care even for 236 patients (28 percent of the sample) whose head CT scans indicated that they had a lesion, a sign of brain injury. Approximately 40 percent of those patients did not see a physician or other health provider three months after discharge, the researchers found.
Also, 279 patients (34 percent of the sample) had three or more moderate to severe post-concussive symptoms three months post-discharge, which should be examined by provider. But only 52 percent of them had a follow-up visit, the researchers found.
They acknowledged some limitations to the study, including that the patients had suffered concussions and, in some cases, may not provide reliable recall of any follow-up care. They also noted the study sites--Level 1 trauma centers that are all affiliated with university hospitals--may not be nationally representative. However, the authors note that these hospitals would typically be expected to do a better job of providing care, suggesting the gaps in follow-up care for a patient in more underserved communities might be even worse than reported here.
"The study shows that we need to give patients and doctors the tools to better identify who should be going in for follow-up care," Seabury said.
In addition to Seabury and Manley, other co-authors of the study were Étienne Gaudette and Dana Goldman of the USC Schaeffer Center, Amy J. Markowitz of UCSF, as well as Jordan Brooks and David Okonkwo of the University of Pittsburgh, as well as the remaining TRACK-TBI investigators, made up of 57 additional scientists including Karen Crawford and Art Toga of USC.
The study was supported by a grant 5U01NS086090-02 through NINDS at the National Institutes of Health. Seabury also received funding via an unrestricted grant to the Department of Ophthalmology at the Keck School of Medicine of USC from Research to Prevent Blindness in New York.