By Mary Chris Jaklevic
Kaiser Health News
Dozens of not-for-profit organizations have formed in the past decade to promote free or low-cost heart screenings for teens.
These groups often claim such tests save lives by finding abnormalities that might pose a risk of sudden cardiac death.
But the efforts are raising concerns. There’s no evidence that screening adolescents with electrocardiograms (ECG) prevents deaths.
Sudden cardiac death is rare in young people, and some physicians worry screening kids with no symptoms or family history of disease could do more harm than good. The tests can set off false alarms that can lead to follow-up tests and risky interventions or force some kids to quit sports unnecessarily.
“There are harms that I don’t think a lot of people realize,” said Dr. Kristin Burns, who oversees a two-year-old registry at the National Institutes of Health of sudden deaths in people under 20. It’s one of several efforts aimed at gathering better data about cardiac abnormalities in kids.
Studies using limited data have found between one and four sudden cardiac deaths occur annually per 100,000 kids between ages 1 and 18. By comparison, 22 out of 100,000 U.S. teens are killed in accidents, including those involving motor vehicles, and nine out of 100,000 commit suicide, according to the Centers for Disease Control and Prevention.
Some screening advocates believe sudden cardiac deaths are underreported and not enough is being done to spare families from the fate of losing a child. “We have to acknowledge that every kid who drops dead, they’ve been failed by the current system,” said Darren Sudman, who founded Simon’s Fund, a screening effort in greater Philadelphia in memory of his infant son, who died of an arrhythmia.
Screening programs say they’re educating parents about the risks. “What we want to emphasize is, make sure your kid is heart-safe,” said Dr. Jonathan Drezner, a sports and family medicine specialist in Seattle at UW Medicine and medical director of the local Nick of Time Foundation.
Enthusiasm for ECGs, which measure the electrical activity in the heart to detect abnormalities, grew after a 2006 study showed they lowered death rates among athletes in Italy. But research in other countries has not yielded similar results, and the Italian researchers recently were accused of refusing to share their data so it could be evaluated independently.
Some 60,000 to 70,000 U.S. teens were screened in 2016, most by foundations created by families who lost a child to sudden cardiac death, said Darren Sudman, who runs an online directory, Screen Across America. It’s unclear whether high school athletes face higher risk than non-athletes, so screening programs usually invite everybody.
Screenings typically are held in high schools and overseen by volunteer cardiologists, with funding from individuals and businesses including hospitals. A handful of hospitals and for-profit companies also run screenings.
It may be presumptuous to claim ECGs save lives, but parents often believe they do, said Sudman. “If I find a heart condition, I promise you there are parents who are thanking me for savings their kid’s life.”
That perception is stoked by tragic stories in the media of children who died suddenly after never reporting a symptom. Meanwhile, the drawbacks of ECGs are seldom depicted. As many as 1 in 10 ECGs detects a potential abnormality, and the emotional and financial toll of such a finding can be significant — especially when they turn out to be wrong.
Following a screening ECG and echocardiogram last fall, Daniel Garza, 16, a talented sophomore basketball player in San Antonio, was told he had hypertrophic cardiomyopathy, a thickening of the heart muscle and the most common cause of sudden cardiac death in young people. He was advised to quit all exercise, at least temporarily.
“We were shocked, just shocked,” said his mother, Denise. She said her son became depressed when he couldn’t play the sport he enjoyed and excelled at. “He came home and cried himself to sleep. He said, ‘Mom, why did God give me this gift to take it away?’”
The Garzas traveled to the Mayo Clinic in Rochester, Minn., where further tests indicated his enlarged heart was a benign condition known as athletic heart, a result of intense training. His mother estimates that correcting the misdiagnosis cost more than $20,000, including medical costs, travel and lost work.
Daniel has returned to the basketball court. Still, Denise Garza said the emotional toll was rough. “It was one of the hardest things my family has ever endured.”
Several cardiologists said they often see cases like this or worse. Even after follow-up testing, it can be unclear which cases are life-threatening, so kids with low risk could be restricted from exercise or given life-altering interventions such as implantable defibrillators, surgery or anti-arrhythmic medications.
Medical groups have wrestled with the issue. The American Heart Association and the American College of Cardiology recommended in 2014 against mass ECG screening, noting that sudden cardiac death is rare in teens and false positives generate “excessive and costly second-tier testing.” ECGs also miss at least 1 in 10 cases of hypertrophic cardiomyopathy and more than 9 in 10 cases of congenital anomalies, the second-most-common cause.
But their expert panel accepted voluntary screening “in relatively small cohorts” if there’s physician involvement, quality control and a recognition of unreliable results and ancillary costs.
By contrast, there’s broad support for automated external defibrillators, which have been shown to prevent deaths at schools and other public places. Some foundations focus their efforts on disseminating the defibrillators.
One problem with ECGs is a lack of good data.
“There’s no evidence we have that ECG screening saves lives,” said Dr. Jonathan Kaltman of the NIH’s National Heart, Lung, and Blood Institute. “There’s never been a controlled clinical trial, which is the only way to answer that question.”
Efforts are underway to improve the accuracy of the screening programs. Some are adding echocardiograms, which use ultrasound to produce images of the heart, to verify potential abnormalities. Advocates say false positives have dropped as a result of better interpretation guidelines, known as the Seattle Criteria, which are expected to soon be endorsed by cardiology societies in revised form.
But the criteria are not perfect, and there’s a “giant gap” in training cardiologists to use them, said Drezner, one of the developers. He’s also a medical adviser for Parent Heart Watch, a consortium of foundations. “If I was a parent, I’d want to know about the experience of the (cardiologists) and what they’re going to do to help my kid if they have a positive screen.”
At the urging of screening advocates, the NIH partnered with the Centers for Disease Control and Prevention to rigorously track cardiac deaths as part of a Sudden Death in the Young Case Registry. So far a handful of states and counties have joined the effort, which helps local health departments collect better data.
The goal is to standardize death investigations and get a firm handle on how often kids die from heart abnormalities as well as the role of factors such as genetics. Initial findings are expected to be available in about two years. The NIH is also funding three university-based research groups to answer key questions about sudden cardiac death in the young.
Some screening organizations are getting behind a nascent initiative with the Cardiac Safety Research Consortium to harness their own screening data for research. It would require standardizing their practices and tracking outcomes, which organizations aren’t now equipped to do.
“Screening is happening. We can’t avoid that,” said Dr. Salim Idriss, director of pediatric electrophysiology at Duke University and co-chair of the initiative. “We have a really good opportunity to get the data we need to make it better.”
Separately, the UT Southwestern Medical Center in Dallas recently began a four-year pilot study involving athletes and band members at eight high schools to determine the feasibility of a full-scale randomized controlled trial.
A valid finding on the overarching question of whether ECG screening saves lives could require at least 800,000 participants and a cost of $15 million, said Dr. Benjamin Levine, a cardiologist and the lead researcher.
The pilot is partly a response to legislation that would mandate ECGs for student athletes in Texas. A similar bill was also introduced in South Carolina. Both bills failed, but it’s expected there will be more attempts to mandate ECGs, leaving state legislators looking for better guidance.
“We’re not going to solve this by having more debates, but by having more data,” Levine said.