This report originally appeared in the June 2011 issue of DOTmed Business News

On a Thursday night in March, Wes Leonard, a 16-year-old basketball star, led his Fennville, Mich., high school team to victory, scoring a lay-up shot in overtime.

Leonard’s teammates picked him up and carried him through the gym. Just moments into the celebration, the teen collapsed.

Hours after being rushed to a local hospital, he was pronounced dead. Leonard suffered a cardiac arrest due to dilated cardiomyopathy -- an enlarged heart.

The Fennville Blackhawks are far from alone in losing a teammate and a friend to sudden death. And when a young athlete dies during a sporting event, the tragedy makes headlines nationwide.

“The whole issue of athletes and sudden death is emotionally charged,” says Dr. Douglas P. Zipes, a distinguished professor emeritus of medicine with the Indiana University School of Medicine. “You have a youngster who is supposed to represent the epitome of health, and all of the sudden, he’s essentially struck by lightning.”

Both parents and medical professionals share a common aim to reduce and ideally prevent sudden deaths in student athletes.



But when it comes to formulating a strategy to achieve that goal, opinion and practice diverge, with rifts even within the cardiology community.

The heart of the issue
There are plenty of estimates but little concrete data regarding deaths among student athletes.

Some researchers say the rate is as low as one in 300,000 youngsters. Others estimate that it’s less than 100 students a year from among the 10 to 12 million participants. And a study published in the journal Circulation this year found the rate of sudden cardiac death among National Collegiate Athletic Association student athletes is one for every 43,770.

But no national and systematic registry exists for sudden death cases in youth and many studies gather their estimates from published news articles about the incidents.

“Various reports carry different numbers -- everything from a few hundred a year to 14,000 a year,” says Michele Snyder, executive director of Parent Heart Watch, an organization that advocates for thorough cardiac screening in youth. “And we truly don’t know.”

Many medical professionals agree. Dr. Stephen Daniels, the pediatrician-in-chief at The Children’s Hospital in Aurora, Colo., and a spokesman for the American Heart Association, says while sudden death is not a minor issue, it’s also not a very common occurrence. “But we don’t have national registries or ways of combining data across jurisdictions in a way that we really have a firm handle on what that number is,” he says.

There is more clarity on the conditions that trigger sudden cardiac arrests. In the United States, the most prevalent cause of sudden death among young athletes is hypertophic cardiomyopathy, an abnormal thickening of the heart muscle that’s often an inherited condition. According to a 2003 article in the New England Journal of Medicine, it accounts for about a quarter of all deaths among student athletes.

Other leading causes include congenital coronary abnormalities and arrhythmogenic right ventricular cardiomyopathy (ARVD), a rare inherited heart muscle condition.

When the media reports on a new sudden death incident, the news reignites the debate not only about whether all students should take part in a mandatory cardiac screening but also how in-depth it should be.

Across the U.S., a personal and family history questionnaire and a standard physical exam are the usual precursors to participation in team sports. Many parents and cardiologists also believe electrocardiograms and echocardiograms should be regular aspects of screening.

But when it comes to the effectiveness, feasibility and cost of a nationwide cardiac screening approach, experts remain divided.

ECG concerns
An electrocardiogram is a quick and painless test that can catch some of the common abnormalities that may lead to a sudden death. “Research shows that a well-read ECG can catch between 40 and 60 percent of the conditions that happen,” says Snyder.

And yet, the American College of Pediatrics, the American College of Cardiology and the AHA do not recommend ECGs to be a formal part of the screening process.
“The current position is that the screening really should focus on personal and family history and the physical examination, as a way of identifying athletes who should then get further evaluation,” says AHA’s Daniels.

Many experts believe that an ECG is not an efficient screening tool because it may miss some disease issues and indicate there’s a problem when there isn’t one. “Screening with an electrocardiogram is pretty controversial,” says Dr. Aaron Berman, chief of cardiovascular disease at Beaumont Hospital, Royal Oak in Michigan.

It’s not uncommon for athletes to have unusual ECGs due to changes in their heart because of intense levels of training, explains Berman, who also runs the hospital’s Healthy Heart Check Program for student athletes. “The fear is, that as many as 15 percent of kids who undergo a screening are going to be found with some kind of abnormality and then will be referred for additional testing,” he says. “There will be a lot of anxiety and expense associated with that.”

To counter some of the potential false positives, Berman’s screening program performs a “quick look echocardiogram” test on students whose ECGs look suspicious. Since starting the program in 2007, Beaumont has screened more than 5,500 kids.

On top of the false positive and false negative rates of ECGs, cost is a common argument against the test. The screening program at Beaumont is funded through philanthropy, with physicians volunteering their time. “If people actually had to pay for this, it would be expensive,” says Berman.

Exactly how expensive?
In a recent study, researchers in Texas screened 2,506 students from 70 school districts using two different models. In one model, students got an ECG exam, and if the test results looked suspicious for hypertrophic cardiomyopathy, athletes also got an echocardiogram. In the other model, all students got both an ECG and an echo exam.

“Because it was a research study, a lot of the costs were involved in doing the research,” says Dr. William Scott, chief of cardiology at Children's Medical Center and professor of pediatrics at the University of Texas Southwestern Medical Center, who took part in the study. “When we tried to break it down into what it costs to do the study, it came out to what we thought was fairly reasonable.”

Scott and colleagues found that an ECG and a screening echo cost about $60 per student. The cost per student when an echo was only done if a student had a suspicious ECG was around $42.

Scott points out that the goal of this particular study was to find out whether or not it was feasible to offer the same quality cardiac screening for student athletes throughout the state, regardless of location. “There’s no question that you can find [heart abnormalities],” he says. “Whether or not this is the best way to do it, we don’t know.”

Yet, Scott points out that nothing in the research data contradicts the current screening recommendations maintained by medical societies.

The researchers plan to publish the complete results of their study in a cardiology journal soon.

In defense of ECGs
Supporters of ECG screenings for athletes say opposition to the test because of its false positive rate is flawed.

Dr. Joseph Marek, a cardiologist who leads the Midwest Heart Foundation, an Illinois-based nonprofit dedicated to improving cardiovascular health through research and community initiatives, knows a thing or two about the test.

As the founder and medical director of the foundation’s Young Hearts for Life (YH4L) Cardiac Screening Program, Marek and his team have screened more than 60,000 active students using ECGs.

According to Marek, as embarrassing as it is for the medical community to admit, few physicians actually know how to calculate a false positive rate and no specific data on the false positive rate of ECGs is currently available.

Some previous research has concluded ECGs produce an abnormal rate of 10 to 40 percent. But that’s because the abnormal rate included “a lot of findings that are normal variance in these young adult athletes and clearly are not indications of the disease we’re looking for,” says Marek.

“When you narrow the criteria to just the conditions that we’re looking for, you get a very acceptable abnormal rate,” he says. “It’s not something that’s going to overwhelm the community with extensive testing.”

Marek also says screening programs for diseases such as breast and prostate cancer have much higher false positive rates – why hold this screening to a different standard?

In a study of 32,000 students screened through the YH4L program, Marek says his team found the abnormal rate of ECGs to be in the low single digits. (The results will be published in September.)

“Just because there is no data that clearly shows it is beneficial, doesn’t mean it shouldn’t be done,” he says. “We do hundreds of things in medicine where there is no definitive data.”

Another benefit of comprehensive screening is that it may catch health issues unrelated to sudden death risk conditions.

At Beaumont Hospital, the screening program identified many students with beginnings of hypertension. “I’d say probably somewhere around 10 percent of our kids were allowed to continue in sports but were recommended to follow up with their own physicians,” says Berman. “I think the earlier you light people up to that sort of problem, the better off they’re going to be.”

For many, it becomes harder to argue the value ECGs based on cost -- is there a price too high when a child’s life hangs in the balance?

ECG proponents say the cost of the tests is miniscule compared to the country’s significant health care spending and innovative approaches can help lower the price tag.

“I believe there are ways we could make this work and I believe it’s our responsibility to do that,” says Snyder, who lost a 17-year-old daughter to sudden cardiac arrest. “While we’re debating whether we can afford this, kids are dying. And we don’t know how many.”

A screening community model
Advocates of broad cardiac screening using ECGs often cite community programs as solutions to keeping the cost to a minimum while still screening a large percentage of active youths.

Marek’s YH4L program is an example of a community initiative that strives to be large scale, cost-effective and efficient. Because of the program’s design, the organization can go into a high school and do about 1,200 ECGs in one day.

To perform the ECGs, YH4L trains community volunteers. Parents take part in a 90-minute training program that discusses sudden cardiac death and teaches them to do an ECG. “We’ve trained about 6,000 community volunteers so far,” says Marek.

A common criticism of the volunteers performing the tests is that they are not medically trained professionals. But Marek says “that’s nonsense.”

“When I was a medical student, I learned how to do an ECG in about five minutes,” he says. “Nowadays, if people can figure out how to use their darn cell phone, they can certainly do an ECG.”

Marek’s team has also carried out an internal study that shows the quality assurance rate of ECGs done by community volunteers is the same or better than that of tests done at an outpatient cardiology department. (The team will publish these findings soon.)

Because parents and cardiologists volunteer their time, the students are screened free of charge. But if the cost were to be calculated, ECGs would run about $10 per student, according to Marek.

Although Marek doesn’t believe extensive cardiac screening should be mandatory, he does think that physicians have a responsibility to inform parents of the sudden cardiac arrest risks and the available testing options.

Not only is there no national registry to gather sudden cardiac arrest numbers, but many studies are also flawed because they use a very rigid definition of “athlete,” says Marek.

“If some young adult dies at home from one of these conditions while he’s playing basketball in the driveway, it doesn’t hit the news,” he says. “But is his death any less important than if he were making a winning basket?”

For many cardiologists, those reasons are enough to continue inspecting students’ electrocardiograms for abnormalities.

“I’ve thought a lot about this. I don’t want to waste my free time doing and reading ECGs and make parents donate their free time,” says Marek. “I’m looking for a reason not to do this and quite frankly, I haven’t found one.”