Written by Bill Pennington
Originally Published May 5, 2013
BOSTON — The drumbeat of alarming stories linking concussions among football players and other athletes to brain disease has led to a new and mushrooming American phenomenon: the specialized youth sports concussion clinic, which one day may be as common as a mall at the edge of town.
In the last three years, dozens of youth concussion clinics have opened in nearly 35 states — outpatient centers often connected to large hospitals that are now filled with young athletes complaining of headaches, amnesia, dizziness or problems concentrating. The proliferation of clinics, however, comes at a time when there is still no agreed-upon, established formula for treating the injuries.
“It is inexact, a science in its infancy,” said Dr. Michael O’Brien of the sports concussion clinic at Boston Children’s Hospital. “We know much more than we once did, but there are lots of layers we still need to figure out.”
Deep concern among parents about the effects of concussions is colliding with the imprecise understanding of the injury. To families whose anxiety has been stoked by reports of former N.F.L. players with degenerative brain disease, the new facilities are seen as the most expert care available. That has parents parading to the clinic waiting rooms.
The trend is playing out vividly in Boston, where the phone hardly stops ringing at the youth sports concussion clinic at Massachusetts General Hospital.
“Parents call saying, ‘I saw a scary report about concussions on Oprah or on the ‘Doctors’ show or Katie Couric’s show,’ ” Dr. Barbara Semakula said, describing a typical day at the clinic. “Their child just hurt his head, and they’ve already leapt to the worst possible scenarios. It’s a little bit of a frenzy out there.”
About three miles away, at Boston Children’s Hospital, patient visits per month to its sports concussion clinic have increased more than fifteenfold in the last five years, to 400 from 25. The clinic, which once consisted of two consultation rooms, now employs nine doctors at four locations and operates six days a week.
“It used to be a completely different scene, with a child’s father walking in reluctantly to tell us, ‘He’s fine; this concussion stuff is nonsense,’ ” said Dr. William Meehan, a clinic co-founder. “It’s totally the opposite now. A kid has one concussion, and the parents are very worried about how he’ll be functioning at 50 years old.”
Doctors nationwide say the new focus on the dangers of concussions is long overdue. Concerned parents are properly seeking better care, which has saved and improved lives. But a confluence of outside forces has also spawned a mania of sorts that has turned the once-ignored concussion into the paramount medical fear of young athletes across the country.
Most prominent have been news media reports about scores of relatively young former professional athletes reporting serious cognitive problems and other later-life illnesses. Several ex-N.F.L. players who have committed suicide, most notably Junior Seau, a former San Diego Chargers and New England Patriots star, have been found posthumously to have had a degenerative brain disease linked to repeated head trauma.
State legislatures have commanded the attention of families as well, with 43 states passing laws requiring school-age athletes who have sustained a concussion to have written authorization from a medical professional, often one trained in concussion management, before they can return to their sport.
The two Boston clinics, one started in 2007 and the other in 2011, are typical examples of the concussion clinic phenomenon, busy centers of a new branch of American health care and windows into the crux of a mounting youth sports fixation.
“We are really in the trenches of a new medical experience,” said Richard Ginsburg, the director of psychological services at Massachusetts General Hospital’s youth sports concussion clinic. “First of all, there’s some hysteria, so a big part of our job is to educate people that 90 percent of concussions are resolved in a month, if not sooner. As for the other 10 percent of patients, they need somewhere to go.
“So we see them. We see it all.”
Uncertainty Among Doctors
Dr. Rebekah Mannix, an emergency room physician and a concussion researcher at Boston Children’s Hospital, works at the front lines of the new world of youth concussion management. Mannix had a concussion while playing college rugby in 1989. After visiting a nearby hospital emergency room, she recalled, she received little guidance about what to expect next — and there was no specialized center to visit if typical concussion symptoms like a headache, nausea, amnesia, fogginess or dizziness persisted.
“They took care of me, but there wasn’t much to say because there wasn’t a lot known,” Mannix said.
Nearly 25 years later, much is still unknown about the roughly four million concussions diagnosed annually in America (millions more probably go undiagnosed). And even with the increased attention to the injury, modern concussion treatment has become a mix of practices derived from prevailing wisdom and experience, limited clinical science and common sense.
“Head injury in general is a strangely archaic field,” Mannix said. “There is no predictability. I cannot say to patient A, ‘You are going to be fine in a week.’ I cannot say to a patient B, ‘You are going to be really sick for three months.’ ”
There is no test or procedure, for example, to verify whether a patient has had a concussion. It is a diagnosis based on a doctor’s examination, observation of symptoms and understanding of the incident that led to the injury.
Brain scans can look for bleeding, but they do not identify a concussion, and they come with risks.
“We’re very afraid these days of radiology to pediatric brains,” Mannix said. “There are times when a scan is the right thing to do, but in the considerable majority of cases, it is not.”
Talking parents out of unnecessary brain scans and repeatedly informing them that a high percentage of concussions will not cause lingering symptoms may be the best medicine given by concussion doctors. They say it is the best way to assuage the panic they hear in the voices of parents and patients.
“We get the Junior Seau question a lot. ‘Is that what my kid is going to be like?’ ” O’Brien, of the Boston Children’s clinic, said. “Parents are sitting in our office wringing their hands with nervousness.”
Paul McDonough of Quincy, Mass., whose daughter, Erin, is a high school hockey player and cheerleader who has had three concussions, said: “When you’re reading autopsy results of N.F.L. players with head trauma, as a parent, it doesn’t make you very patient or put you at ease. That’s why we’re all going to specialists.”
Erin McDonough saw Dr. Cynthia Stein at the Boston Children’s clinic. Among the things Stein routinely explains to patients is that pro football players like Seau may have taken thousands of hits to the head in youth leagues, high school and college — in addition to 10 or more years in the N.F.L.
“Who knows how many concussions someone like Junior Seau really had?” Stein said. “And we don’t know why he died. It’s not an appropriate comparison. Our patients, if their concussions are managed properly, are going to heal on their own. The body knows how to take care of itself.”
But complicating the care is the belief that the recovery time for younger concussion patients will be longer.
“A concussion might be the only injury where the younger you are, the longer it takes to get better,” Stein said. “Anything else, if you cut your hand or whatever, the younger you are, the quicker you heal. But for a concussion, recent studies indicate that a 10-year-old heals slower than a 14-year-old, and a 14-year-old heals slower than a 17-year-old.”
But there is no wall chart or medical textbook that says just how much rest or inactivity a 10-year-old concussion patient needs to recover compared with a 14-year-old. Every case, regardless of age, can be different based on a multitude of factors, from the severity of the original head injury to genetic, biomedical or anatomical characteristics. Other weighty considerations include the number of previous concussions sustained by a patient and when those concussions occurred.
The lack of guidelines frustrates athletes and their parents, and can confound doctors. In this setting, determining when a young athlete is ready to return to a contact sport, or to school for the mental rigor of regular class work, becomes a highly nuanced, open-ended calculation.
“Parents will get irritated and say, ‘It’s three weeks and he still has headaches — the last concussion he had, he was better in a day,’ ” Stein said. “They want a fix. The changing timetables can be trying. But I tell them that you can’t try harder to heal the brain, just like you can’t try harder to make a broken leg heal faster.”
Stein added: “No one would ask someone wearing a cast on their leg to run 10 miles, because we all know that’s dangerous. Just because you can’t see a concussion like you can see a cast, that doesn’t make it any less dangerous if you don’t rest it.”
Risk of Repeat Injuries
In keeping with its scientifically indefinite nature, concussion management has few collectively recognized, widely acknowledged tenets. But if there is one that is accepted with only a modicum of enduring debate, it is the understanding that athletes who have had a concussion go through a period shortly after the injury during which they are especially vulnerable to catastrophic injury if subjected to another blow to the head. In the worst case, known as second-impact syndrome, it can be a fatal combination.
The chief goal of youth concussion clinics, and the chief purpose of the widespread concussion-related state legislation, is to protect those susceptible to repeat concussions in this period of vulnerability. But no one knows just how long or short that period is.
One of the most commonly known treatment protocols is cognitive rest, which often means avoiding mental stimulation like video games, television or situations with bright lights or loud noises for an extended period after the injury. It is sometimes referred to as the “two weeks lying in a cool, dark room” therapy. Like so many things in concussion management, it has been supported by anecdotal case studies but is unverified by standardized clinical trials.
Dr. Walter Panis, a neurologist at the Massachusetts General clinic, said: “Two weeks in a cool, dark room? Good for mushrooms, bad for people.”
At the clinics in Boston and at others nationwide, determining how much activity and stimulation are appropriate, and how soon to introduce them after a concussion, is now done on a case-by-case basis. There is evidence that certain step-by-step treatment schedules have been successful, but therapies considered standard two years ago — like two weeks in a cool, dark room — are being challenged.
“When you get a concussion, you’re probably feeling lousy, so you do need some rest,” Panis said. “You do need to avoid being stimulated by everything because it will make you feel worse. But that shouldn’t last for too long.”
Although less controversial, another misunderstood tool in the evaluation of when it is safe for a concussion patient to return to the field is the neurocognitive baseline test. Thousands of school districts are having their older athletes — there is no reliable test for a 10-year-old, for example — take the computerized tests before they begin a season.
The tests, which measure reaction time, learning and memory skills, and how quickly a person thinks and solves problems, are stored for future use. If an athlete sustains a head injury, the preseason test can be used to assess whether the athlete’s cognitive function has been altered. More important, weeks after a concussion, the test can help measure whether the athlete still has a cognitive deficit.
However, it is not a concussion test. In addition, concussion specialists do not recommend retaking the baseline test soon after a head injury because it can exacerbate concussion symptoms. It is also not meant to be the only test that determines whether an athlete is ready to play again.
“It is not a red-light, green-light test,” said Alex Taylor, a neuropsychologist at Boston Children’s Hospital who works with patients from the concussion clinic. “That is where people get sidetracked. It does not determine who is completely recovered. It is one of the tools for doing that.”
Inside the Boston clinics, in consult, a team of neurologists, sports medicine and rehabilitation specialists, physical therapists, psychologists and psychiatrists may determine a recommended course for a single patient.
But the acknowledged subjective nature of this multifaceted process often leads to awkward office meetings among doctors, patients and parents. Put a high school state playoff game or a major recruiting showcase in the immediate future of a promising athlete whose concussion occurred three weeks ago — but has not healed sufficiently, according to the doctors — and the discussion can become contentious.
“People argue with you, especially if it’s a high-level athlete who is playing on three different soccer teams and the family feels they’ve invested years in an upcoming opportunity and now we’re getting in the way,” Panis said. “But you know, I’ve also had the kid trying to talk me into playing and had mom in the corner shaking her head and saying: ‘No, he’s not himself yet. Don’t let him.’ Parents know their kids best.”
Panis routinely declines to sign the forms required by Massachusetts law for a return to competition, even if he knows some patients just take the forms elsewhere.
“You can always find a doctor to agree with you,” he said.
Other patients barred from playing for their schools suit up instead for their travel teams, which are not required to abide by state youth sports concussion laws.
Panis has treated young athletes who had nine concussions and were still playing.
“They’re teenagers,” he said. “They have one or two and keep going without much of a problem until it catches up with them.”
Brian Lilja, a patient at Boston Children’s Hospital’s concussion clinic and a junior who played football and lacrosse for Methuen High School outside Boston, recalls sustaining what he now knows was a concussion as a freshman football player. He probably had a second concussion later that season. He kept playing.
“The players are bigger in high school and they hit harder; I didn’t really worry about it or care,” Lilja said in February. “I stayed in.”
Then, playing lacrosse last spring, he sustained a third concussion.
“This time, he couldn’t have possibly played anything — he had a hard time getting out of bed,” his mother, Jennifer Lilja, said. “The personality change was scary. He was just so spacey. Studying gave him headaches. Here was a big, 6-foot-2 kid not being able to do much of anything.
“Eventually, he was very depressed. It was heartbreaking seeing all the effects of something we just didn’t understand.”
Seven months after Brian Lilja’s last concussion, his symptoms subsided enough that he started to help coach Methuen’s junior varsity lacrosse team. With a gradual schedule laid out by the clinic’s doctors, he resumed a normal classroom workload.
“I read every story about concussions in the N.F.L. and N.H.L., and I tell my friends and other athletes everything I’ve learned,” Lilja said. “I wish I knew what I know now; I would have rested my brain after my first concussion.”
Clinics’ Bottom Lines
The nationwide proliferation of youth sports clinics is a reaction to a health care demand. But are the clinics also profit centers?
Dr. Peter Greenspan, the vice chairman of the pediatrics department at Massachusetts General Hospital and medical director of MassGeneral Hospital for Children, said of his clinic: “We’re happy if we break even. It does not produce revenue.”
Meehan, of Boston Children’s Hospital, responded similarly, saying that if the clinic was good for business, it was principally because of the good will it brought the institution.
Interviews with directors of youth concussion clinics nationwide produced a consensus that the clinics were not significant moneymakers because they were not procedure driven, meaning that they do not typically lead to expensive imaging tests or operations. Instead, they tie up doctors in lengthy, multifaceted patient consultations.
But Michael Bergeron, the executive director of the National Youth Sports Health and Safety Institute, offered an additional perspective. Bergeron agreed that the clinics do not usually lead to costly procedures, but he said the volume of patients they attracted to an institution or an individual practice could have residual benefits that boosted the bottom line.
“Concussion clinics might be seen as a loss leader for the halo effect they bring the institution,” Bergeron said. “People recognize you as an authority offering a timely service that is very much in the news. It might make them consider you for other treatments, too. It’s another dimension to promote on your Web site. It’s an opportunity to lift your profile.”
Notice of the Boston clinics is not hard to find on their hospital Web sites, but they have not otherwise been marketed aggressively. Trying to find them at the hospitals can be somewhat challenging because they are tucked inside larger, more established sports medicine wings.
Most clinic patients go to the clinics because they are referred by their pediatricians, their primary care physicians or the doctors attending to them during an emergency room visit. Emergency room visits by children and adolescents with brain injuries have increased by more than 60 percent in the past eight years, according to the federal Centers for Disease Control and Prevention.
“Parents are better informed and they want these injuries better managed, which is the right reaction,” said Kevin Guskiewicz, the founding director of the Matthew Gfeller Sport-Related Traumatic Brain Injury Research Center at the University of North Carolina. “So I’m not surprised there are all these concussion clinics sprouting up to treat their kids. Time will tell if it is a novelty. What happens when the heightened awareness and fear subsides?”
Some concussion specialists working at clinics said they believed the facilities would be more prevalent in 5 or 10 years, with a clinic perhaps located near every medium-size city in the country.
“I think that’s pretty likely,” O’Brien, of the Boston Children’s Hospital clinic, said. “Although I do think, as pediatricians and primary care providers get more continuing medical education about concussions, they will become more comfortable and adept with treating them in their office.
“Clinics like ours may be the places for the more complex cases.”
O’Brien said nearly half of the current cases at the clinic would be classified as nonstandard or complex.
“And that’s 200 cases a month in one clinic in one city,” he said.
If the widespread anxiety about concussions is diminished in time, if the frenzy that doctors describe abates, there could be other outcomes as well, like a better understanding that a concussion in a school-age athlete is not necessarily a pathway to the kind of dementia found in some aging N.F.L. players.
“Too often these days, I see moms and dads who are so worried about a kid’s concussion or so worried about a second concussion that they discourage their kid from playing their sports,” Meehan said. “That’s the worst thing they can do. A concussion is a problem and a serious one, but at the same time, obesity and sedentary lifestyles are having a much greater impact on society. The worst thing we could do is make kids less active.”
Ginsburg, the Massachusetts General psychologist, who has written a book about youth sports, speaks frequently at schools and likes to poll the student audiences on various issues. One recent weekday at the clinic, staff members convened in a conference room for lunch.
“I was at an elementary school recently,” Ginsburg told the group. “I interviewed the students and asked them to name the No. 1 thing they were afraid of. They all started talking about concussions.”
The room went silent.
“People talk about the future of concussion management,” Ginsburg said. “In 10 years, if I go back to that elementary school and ask the kids what they’re afraid of, I really hope concussions aren’t the first thing that comes to mind.”