This article appeared in Medpage Today.
Are physicians in Europe more curious than physicians in the United States? I get that impression after reading headlines from the recent study about soccer players and heart screenings in England:
- “Screening fails to predict most heart deaths in young soccer players” (Reuters)
- “More young footballers dying of heart problems than thought, FA study finds” (The Guardian)
In fact, many local reactions to this study, and the heart screening studies before it, have become very predictable. They are quick to raise doubts and cast judgments, like “screening fails to predict most heart deaths.” As a parent, patient, and advocate, I find these reactions to be very … curious.
Curiosity has played a tremendous role in my life. My son died 13 years ago. Everyone assumed it was sudden infant death syndrome (SIDS). However, our pediatrician was curious. She said, “Get your hearts checked, because babies just don’t die.” As a result, Phyllis, Simon’s mom, was diagnosed with Long QT syndrome. Long QT has been linked to up to 15% of all SIDS deaths and is one of several conditions that lead to sudden cardiac arrest in children.
If we’re open to it, this study raises some great questions and reveals some areas for improvement. Here are a few that jumped out at me:
- The status quo does not work. The physical and survey missed 93% of the heart conditions that can lead to sudden death and 67% of other heart conditions. In other words, there were hundreds of false negatives (of the 11,168 young athletes screened). Can the ECG and/or echo help us screen better and decrease the number of false negatives?
- The leading cause of death of adults in this country is cardiac arrest. The screening found a total of 267 heart conditions. Some were more serious than others. Won’t detecting these conditions early in life lead to better quality of life and lower healthcare costs?
- Despite detecting 267 heart conditions, the screening failed to detect six. Some conditions take time to develop. Why? Could screening help us better understand when and why these heart conditions develop?
- No one knows the real cost of screenings. The healthcare system is broken and pricing is erratic. Heart screenings are new. Today, we order lots of tests to learn the difference between abnormal and normal variance. Won’t the frequency and cost of additional tests decrease over time as we get smarter?
- Six young athletes died after their conditions went undetected. Two others died after ignoring their doctor’s advice. Forty were treated and have not died. How many deaths may have been prevented from this screening? Could a second screening at a later date have prevented the six deaths? Is there a best time to screen?
- There are two ways to prevent sudden cardiac death – detection and preparation. Screening helps to identify the conditions. CPR and automated external defibrillator (AED) devices reduce sudden death. We’re never asked to choose smoke detectors or fire extinguishers, so why should we have to choose between ECG and AED?
I’m biased. My son died from an undetected heart condition. My organization, Simon’s Heart, has helped students discover heart conditions. Parents have thanked me for saving their child’s life. But, even I don’t reach a conclusion from this study. I remain curious. How many students really die from undetected heart conditions? How many kids saved with an AED device were cleared during a wellness check or sports physical? What is the best way to screen kids to prevent sudden cardiac arrest? I hope that you’ll remain curious too.