April 27, 2020
The brain damage that may occur in football players has received a lot of attention in recent years. But a new study suggests that former players who get a diagnosis of chronic traumatic encephalopathy (CTE) when they’re still alive may well be getting the wrong diagnosis.
CTE can only be diagnosed with an autopsy, the researchers explained. Other conditions could cause the symptoms leading to a mistaken CTE diagnosis.
“There is currently no universally agreed upon way to clinically diagnose a living player, yet our study found that many former players are reporting that they received CTE diagnoses from their medical care providers,” said the study’s lead author, Rachel Grashow. She’s a research scientist at the Harvard T.H. Chan School of Public Health, in Boston.
Her team surveyed nearly 4,000 former National Football League (NFL) players and found nearly 3% had received a CTE diagnosis.
Grashow said the researchers were concerned that “clinicians are quick to diagnose CTE.” Instead, she added, doctors should focus on a broad array of possibilities, particularly conditions that can be treated and may improve a player’s quality of life.
CTE started to get a lot more attention in 2015 after the family of NFL legend Frank Gifford said he had suffered from mental issues caused by CTE. The brain condition has been linked to repeated head trauma, which can be common in professional football players. CTE is also believed to have contributed to the suicide of retired NFL great Junior Seau at age 43.
The current research included data from the ongoing Football Players Health Study. Investigators surveyed 3,913 former NFL players who played from 1960 or later. In 1960, the league moved from using soft leather helmets to hard plastic.
The players who responded to the researchers were between 24 and 89 years old.
In players under 60, 2.3% reported a CTE diagnosis, and 3.7% of those over 60 said they had been diagnosed with CTE, according to the report published online April 13 in the Annals of Neurology.
Symptoms of mental impairment, such as difficulty concentrating, forgetfulness and mood changes were more common among the athletes with a CTE diagnosis. And players diagnosed with CTE were more likely than those without the diagnosis to have one or more of these conditions: sleep apnea, abnormal cholesterol, high blood pressure, depression, obesity, heart diseases, low testosterone and prescription pain medicine use.
The ramifications of a possible misdiagnosis are significant, Grashow said. “Believing that someone has this diagnosis — currently impossible to confirm during life and for which there are no treatments — could lead to despair, depression and suicidal thoughts in players,” she said. “Such a diagnosis may also encourage passive health behaviors, whereby players stop proactively working to improve their diet, sleep habits and physical activity habits.”
Dr. Ira Goldstein is director of neurotrauma at Rutgers New Jersey Medical School.
“The biggest worry in saying you have CTE and not something else, is that you may be missing out on an opportunity to treat something else,” Goldstein said.
“CTE is not reversible, but there are other conditions that are, like nutritional deficits,” he said.
Goldstein also noted that there are some brain conditions that can be treated with surgery that mimic CTE symptoms, including tumors and a buildup of fluid in the brain. Another condition that could be mistaken for CTE is vascular dementia. And while that condition can’t be reversed, there are treatments, such as controlling blood pressure and taking aspirin to prevent blood clots, that can help prevent it from getting worse, he explained.
Goldstein said researchers are studying new ways to diagnose CTE in people while they’re still alive. PET scans, spinal fluid analysis and a blood test that looks for certain substances in the blood are all being evaluated.
Grashow said the researchers hope their study’s findings help educate medical providers about the limits and potential consequences in diagnosing CTE in someone living.
“We also want to empower players and their families to advocate for themselves in medical settings, and push back on clinicians who suggest CTE without exploring other health conditions that affect cognition,” she said.