Concussion: Why Some Neurologists Are Calling ‘Foul’ Over Criteria for NFL Concussion Settlement
BY: Neurology Today: October 4, 2018-Volume 18-Issue 19-p 1,38–39
Concussion experts who assess traumatic brain injury and its complications contend that the criteria for determining the eligibility of retired NFL players for the concussion settlement lawsuit are not complete or appropriate.
The criteria by which the NFL’s concussion settlement is determining whether retired players have suffered compensable brain injuries ignores accepted clinical standards for diagnosing dementia, includes vague requirements that are wide open to misinterpretation, and excludes such symptoms as chronic headaches, mood and behavioral changes, neurologists who are deeply familiar with the settlement terms told Neurology Today.
The result, they say, is both under- and over-diagnosis of significant brain disorders associated with a history of game-related concussions.
“This whole lawsuit settlement process is a disaster,” said Frank Conidi, DO, director of the Florida Center for Headache and Sports Neurology. “It has nothing to do with real medicine.”
Since the settlement took effect on January 7, 2017, more than 20,000 retired players have signed up to be eligible for compensation if they develop brain disorders associated with concussions incurred while playing football for the NFL.
Initially projected by actuaries to cost the NFL about $400 million in the first decade, the settlement has already led to just over $534 million in approved monetary awards in less than two years. As a result, attorneys representing the players now estimate that the NFL might ultimately pay out $1.4 billion, nearly half a billion over the NFL’s original estimate.
Even so, neurologists interviewed by Neurology Today disputed the assertion made by the NFL earlier this year that the “widespread fraud” by “unscrupulous doctors and lawyers” was infecting the claims process. To the contrary, they assert that players with brain disorders clearly attributable to their history of playing for the NFL are unfairly being denied compensation.
Under the terms of the settlement, players can be compensated up to a maximum of $5 million if they are diagnosed with (or die of) the most serious brain disorders associated with a history of concussions: Alzheimer’s disease, amyotrophic lateral sclerosis, or Parkinson’s disease.
The players are eligible for lesser payouts if they are diagnosed by a neurologist as meeting either of two standards defined by the settlement for neurocognitive dementia: level 1.5 (“early” dementia) or level 2 (‘moderate” dementia). It is those standards, for level 1.5 or 2, that have come under particular fire by neurologists.
“Let’s start from the fact that those are fictitious diagnoses,” said Dr. Conidi, who has been retained as the expert for retired players who opt out of the settlement, and has evaluated more than 500 players in that capacity. “Level 1.5, level 2, they don’t exist. They’re not in the DSM-5. Players come to see me and say, ‘I’m a level 1.5.’ That means nothing. We don’t know what 1.5 is. The whole thing is a mess.”
To diagnose level 1.5 or 2, the examining neurologist must take the player’s medical history and then administer either the Mini-Mental State Examination or Montreal Cognitive Assessment. In addition, the neurologist reviews cognitive test results conducted by a board-certified neuropsychologist and and a sworn affidavit from someone familiar with the player’s condition but not a family member attesting to functional impairment from cognitive loss. Finally, the neurologist is asked to administer three of the six parts of the Clinical Dementia Rating (CDR) scale: Community Affairs; Home & Hobbies; and Personal Care.
“They are taking three of the six areas, not the whole CDR instrument,” said Randolph W. Evans, MD, FAAN, a headache specialist and clinical professor of neurology at Baylor College of Medicine in Houston. “Using just the last three questions on the CDR has not been validated in people with Alzheimer’s and certainly not in retired NFL players to evaluate functional impairment.”
Dr. Evans, who has examined 395 of the retired players as part of the settlement process to determine their eligibility for compensation, noted that the CDR was developed for use in trials, and is not generally used in clinical practice.
“The affidavit involves asking people other than a family member such as a friend or current employer to give information about functional impairment such as has a declining interest in home and hobbies, or do they have enuresis,” Dr. Evans said. “I do not find that reasonable. We have no way of independently verifying whether the information they give is accurate.”
Overall, Dr. Evans said, “The criteria, to me, were not entirely clear. I emailed the lawyers administering the award many times about how to apply the criteria. Additional rules were provided during the first year by the administrators. On audits, attorneys for the NFL challenged some of my reports finding level 1.5 or 2.0 because the person was driving or working, which is not evidence-based.”
About one-third of people with Alzheimer’s drive, and some even continue to work through the mild stages, he pointed out.
In May, after nearly a year of examining players, Dr. Evans was informed by administrators for the settlement that his contract for conducting such examinations was being terminated but no cause was provided.
“I don’t know the reason for termination but suspect they didn’t agree with my methods,” Dr. Evans said. “If someone had abnormal neuropsych testing, but the decline indicated by the affidavit was not at the same level, I would still find someone to be impaired. In the guidelines, the neurologist is allowed to use medically sound judgment. You had to weigh everything. I would give the most weight to the neuropsych testing.”
EXCLUDED SYMPTOMS OF INJURY
Another problem with the settlement criteria, neurologists said, is that cognitive decline, narrowly defined, is not the only harm that can result from a history of concussions.
“Dementia is not the only negative outcome a person can have from repetitive trauma,” said Jeffrey Kutcher, MD, FAAN, who serves as a neurology advisor to the players’ associations of both the NFL and the National Hockey League. “You can have chronic headaches, mood changes. There can be many things going on. There are all sorts of neurocognitive complaints that can be either due to playing football or modified by playing football.”
In December, Dr. Evans published a pilot study in Practical Neurology describing the prevalence of symptoms in the first 50 players he examined on behalf as part of the settlement process. The one-year prevalence of migraine in players, he found, was 92 percent, including 56 percent whose migraines were episodic and 36 percent, chronic. Current depression was reported by 78 percent; anxiety by 86 percent; nocturnal enuresis by 78 percent; essential tremor by 22 percent, and Parkinson’s disease by 4 percent.
In 2015, Dr. Conidi presented results at the AAN annual meeting of his pilot study of 10 NFL players. None had a history of headaches prior to playing for the NFL, but after an average of 7.33 concussions incurred during their career, the group’s mean headache days per month was 24 out of 30, with 14.6 of those days meeting the criteria for migraine.
Also excluded from the settlement are findings pertaining to changes in mood and behavior, one of the aspects that so bothered a leading neuropsychologist at Boston University School of Medicine to submit a declaration to the judge in the case.
“I was appalled when I read the settlement and saw its nitty-gritty details,” said Robert A. Stern, PhD, professor of neurology, neurosurgery and anatomy & neurobiology and director of clinical research at the university’s Chronic Traumatic Encephalopathy Center and clinical core director at the Boston University Alzheimer’s Disease Center. “The algorithm focuses only on cognitive impairment and excludes anything to do with mood and behavior.”
Also troubling to Dr. Stern is that if any other medical problem is found in a player that could also lead to cognitive impairment, including sleep apnea or evidence of white matter abnormalities on imaging, the player is denied compensation for Alzheimer’s disease, regardless of the severity of the cognitive impairment and dementia.
“I’ve been shown many denials from the settlement that I was flabbergasted by,” Dr. Stern said. “People might clearly show evidence of dementia but in the person’s medical record there are normal, common things like sleep apnea or white matter changes. So they deny the claim outright or compensate at the lower level of Neurocognitive Impairment 1.5 and not Alzheimer’s disease.”
Perhaps most peculiar is that neurologists who specialize in the treatment of concussions are excluded from diagnosing the players in the settlement, Dr. Conidi said.
“If you are like me, a concussion expert, I would never qualify,” he said. “They are only allowing general community neurologists. Now they’re funneling the players into their own doctors. They got rid of Randolph Evans for no reason. This guy is so scrupulous. He goes by the book.”