Over 20 years, no sports-related fatalities in cohort with genetic heart disease
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In a cohort of athletes with long QT syndrome or other genetic heart diseases who were approved to return to play, there were no sports-related deaths over 20 years, researchers reported at Heart Rhythm 2021.
“When I joined Mayo Clinic’s staff in 2000, we rejected the prevailing approach to athletes with genetic heart diseases that was embraced throughout the world: ‘If in doubt, kick them out.’ After seeing the demoralizing and destructive effects of disqualification on athletes, we decided to embrace a shared and informed decision-making process,” Michael J. Ackerman, MD, PhD, director of the Windland Smith Rice Genetic Heart Rhythm Clinic at Mayo Clinic, said in a press release.
To evaluate a shared decision-making program for athletic patients with long QT syndrome or other genetic heart diseases implemented for 20 years at Mayo Clinic, Ackerman and colleagues analyzed 672 patients (494 with long QT syndrome; 47% women; mean age at diagnosis, 15 years) who were given return-to-play approval between July 2000 and July 2020. Mean follow-up was 4.2 years and total follow-up was 2,056 years. The results were simultaneously published in the Journal of the American College of Cardiology.
Among those with long QT syndrome, 16% had symptoms before being diagnosed and 11.7% had an implantable cardioverter defibrillator.
During the study period, there were no sports-related deaths associated with genetic heart disease, the researchers found. At least one nonlethal breakthrough long QT syndrome-associated event occurred in 5.9% of patients.
Among the cohort, 3% had a nonlethal breakthrough long QT syndrome-associated event while still active in athletics. Of the 15 athletes for whom that was the case, three (0.6% of the overall cohort) had a sports-related event and 12 (2.4% of the overall cohort) had a non-sports-related event, according to the researchers.
For the cohort, the event rate was 1.16 per 100 person-years of follow-up, the researchers found.
“The results of implementing shared decision-making have been incredibly satisfying and in fact have reshaped the global conversation for athletes with a wide variety of genetic heart diseases,” Ackerman said in the release. “Young people with genetic heart disease can grow up and dream big. Such athletes will be able to reach for the highest level of Olympic and professional sports.”
He added that some patients cannot return to sports because they have a condition that accelerates with sports activity, and between 15% and 20% of those who went through the shared decision-making program decided not to return to sports.
In a related editorial published in JACC, Susan P. Etheridge, MD, director of the Pediatric Cardiology Fellowship and Residency Program at the University of Utah School of Medicine and Primary Children’s Medical Center, and Elizabeth V. Saarel, MD, pediatric cardiologist and electrophysiologist at St. Luke’s Health System in Boise, Idaho, wrote, “Compliance with our recommendations increases when we make evidence-informed and value congruent medical decisions with our patients.
“We are moving toward a more lenient and less paternalistic approach,” Etheridge and Saarel wrote. “Patients live long lives despite their genetic arrhythmia diagnoses. Data like those provided [in the present study] help us understand that once evaluated, appropriately monitored, and treated, most can return to play and hopefully live long and happy lives.”
References:
- Etheridge SP, et al. J Am Coll Cardiol. 2021;doi:10.1016/j.jacc.2021.04.047.
- Tobert KE, et al. J Am Coll Cardiol. 2021;doi:10.1016/j.jacc.2021.04.026.
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Tobert KE, et al. Abstract B-AB11-01. Presented at: Heart Rhythm 2021; July 28-31, 2021 (hybrid meeting).
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