Return to play can be managed for athletes with genetic heart disease, study finds

Being diagnosed with a genetic heart disease such as long QT syndrome, which can cause sudden cardiac death, has long been an end of the game for young athletes. But a 20-year study conducted at the Mayo Clinic following those athletes who were allowed to return to play suggests that the risks can be managed through a shared decision-making process. The results of the retrospective study will be presented at the Heart Rhythm Society’s annual meeting on Tuesday, July 27 and simultaneously published in the Journal of the American College of Cardiology.

In the study cohort, there were 672 athlete patients with genetic heart diseases that predisposed them to sudden cardiac arrest triggered by the disease. Of those athletes, 495 suffered from long QT syndrome, a genetic heart disease that can cause fainting, seizures, sudden cardiac arrest, and even sudden cardiac death.

In more than 2,000 combined years of follow-up, no sports-related deaths have been found in athletes diagnosed with genetic heart disease who have decided to return to gambling. Cardiac milestones? fainting due to arrhythmia, seizures, symptomatic ventricular tachycardia, and appropriate shocks caused by their implantable cardioverting defibrillator (ICD) have occurred during and after exercise, but these events were not fatal. Most athletes did not have an ICD. Of these, none required a lifesaving shock from an automatic external defibrillator, although this equipment was part of every athlete’s safety equipment and emergency action plan. These data show that the athletes in the cohort had a little more than a 1% chance of having a non-lethal episode during sport each year.

The results were categorized into two groups: athletes with long QT syndrome and athletes with other genetic heart conditions known to cause sudden cardiac arrest. Specifically, 29 patients had one or more cardiac rupture events associated with their long QT syndrome. Fifteen of them were athletes at the time, and three had a sports-related heart event. In 177 patients with other genetic heart diseases, including hypertrophic cardiomyopathy and catecholaminergic polymorphic ventricular tachycardia, 14 non-lethal cardiac events occurred during the return-to-play time.

The study is a continuation of the return to play research that Michael J. Ackerman, MD, Ph.D., first published in JAMA in 2012. Dr. Ackerman is a genetic cardiologist and directs the Windland Smith Rice Genetic Heart Rhythm Clinic. at the Mayo Clinic.

When I joined the Mayo Clinic staff in 2000, we rejected the dominant approach to athletes with genetic heart disease that was taken around the world: “If in doubt, kick them out”. After seeing the demoralizing and destructive effects of disqualification on athletes, we decided to adopt a shared and informed decision-making process. ”

Dr Michael J. Ackerman, Genetic Cardiologist, Mayo Clinic

There are important steps in shared decision-making for a return to play that Dr. Ackerman says are critical to the success of the process. It starts with extensive testing, a personalized treatment plan, a discussion of risks, and a review of current guidelines for athletic participation. If the athlete and the parents are unanimous in their decision? when age appropriate? return to play is authorized. Then coaches and school officials are briefed and safety measures are put in place, including having a personal automatic electronic defibrillator, avoiding drugs that prolong the QT interval in the case of long QT syndrome, maintaining proper hydration and electrolyte balance, and have annual follow-up visits with their genetic cardiologist for risk reassessment and treatment review.

The study included athletes participating in competitive sports organized between July 1, 2000 and July 31, 2020. Each athlete’s file was reviewed for clinical details, treatments, groundbreaking cardiac events, and sport (s). practice. The most physically active sport of each athlete was used to rank the individual risk level. Interestingly, no striking difference in event rate was based on sport classification. Return-to-play time was unique to each athlete, calculated as the time each athlete participated in sports after assessment and approval to return to play.

“The results of implementing shared decision making have been incredibly satisfying and in fact reshaped the global conversation for athletes with a wide variety of genetic heart conditions,” said Dr. Ackerman. “Young people with genetic heart disease can grow up and dream big. These athletes will be able to reach the highest level of Olympic and professional sports.”

However, Dr. Ackerman cautions that this approach is not a one-size-fits-all solution. For some athletes, the shared decision-making process results in a recommendation to stop their sport of choice. This is the case with athletes who have a specific type of genetic heart disease that accelerates with athletic activity. He said 15% to 20% of his athletic patients come to a family decision of athletic disqualification after assessment. So not everyone chooses to return to play when the option is presented.


Journal reference:

Tobert, KE, et al. (2021) Back to the game for athletes with long QT syndrome or genetic heart disease predisposing to sudden death. Journal of the American College of Cardiology.

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