Can Sudden Cardiac Death of the Young be Prevented?

March 1, 2012 by Debra Duquette, MS, CGC, Genomics Coordinator & Beth Anderson, MPH, Genomics Epidemiologist, Michigan Department of Community Health

A Michigan Story on Lessons Learned and Action Steps to Take

The winter months have arrived and with them comes a certain madness, specifically March Madness. On March 12, 2012 the NCAA men’s college basketball tournament will commence. Most of the focus will be on cheering for the teams we picked to win our brackets; however, as Michigan learned last year, this isn’t the only thing we need to focus on.

On March 3, 2011, with less than 30 seconds left in overtime in Fennville High School’s final regular season men’s basketball game, a winning layup was scored that brought Fennville’s team an undefeated record. With district playoffs in Fennville’s future, the gymnasium was full of celebration. Within moments, the crowd went silent as their star player collapsed to the ground. Wes Leonard, the player who had scored the winning basket moments before was now unconscious. Over 2,000 fans stood stunned, waiting for paramedics to arrive. Although an AED was present at the school, it was not charged and CPR was not performed because people did not think that cardiac arrest could be at fault in someone so young. Wes was later declared dead at a local hospital and the autopsy showed that he died of cardiac arrest due to an enlarged heart.

Sudden deaths of young athletes bring attention to an important public health problem known as sudden cardiac death of the young (SCDY), which occurs in non-athletes, too. On average, an estimated 66 athletes die suddenly of cardiac cause each year in the United States. Each year in Michigan alone, approximately 300 people aged 1-39 years die suddenly of a cardiac cause. Importantly, SCDY is known to have a strong hereditary component in many cases.

The Michigan Department of Community Health (MDCH) Genomics Program , with support from CDC’s Office of Public Health Genomics, has been working since 2005 with a motivated group of experts and advocates to assess the impact of SCDY and identify action steps for prevention. Multiple data sources have been used to gather information about the burden, impact and causes of SCDY in Michigan.

Based on death certificates , 3,134 SCDY cases were found between 1999-2009; of these, 2,179 occurred in males, 1,089 in blacks, and 1,488 occurred in people aged 35-39 years.
Based on a statewide random digit-dialed telephone survey called the Michigan Behavioral Risk Factor Surveillance System , the proportion of adults in Michigan with a family history of SCDY was found to be 6.3%. Of adults reporting a family history, 35.5% had an immediate relative and 26.2% had multiple relatives. Blacks had the highest reported rate of SCDY family history at 11.2%.
Based on an expert mortality review system created to investigate in detail recent cases of SCDY in an effort to identify possible patient-, provider-, and system-level changes to prevent future deaths, 21 action steps were identified in the following five areas of need:
- pre-participation sports screening
- provider education and public awareness
- public awareness of cardiac symptoms and CPR/AED training
- emergency response protocols
- medical examiner protocols

An action step for pre-participation sports screening was to “make formal recommendations to the Michigan High School Athletic Association (MHSAA) to revise [the] sports participation screening and physical form”. MDCH led a work group with more than 55 partners to recommend a new form that included personal history, family history, and physical exam questions on SCDY risk factors to the athletic association in 2009 and 2010.

The form includes two new sections. The first is called “Heart Health Questions About You” and includes questions on pressure or tightness in the chest, irregular heartbeats, lightheadedness, unexplained seizures and more. The second section is called “Heart Health Questions About Your Family” and includes questions on family history of hypertrophic cardiomyopathy, long QT, heart problems, pacemaker, unexplained fainting, early death from a cardiac cause, and more.

The MHSAA approved these recommendations in 2010 and implemented use of the form for the 2011-12 academic year, when approximately 400,000 of these forms were distributed., and the implementation of this action step has resulted in thousands of parents being asked about family history of SCDY, as well as assessing the student athlete’s personal history of cardiac symptoms.

The new form is aligned with the 2010 American Academy of Family Physicians, American Academy of Pediatrics, American College of Sports Medicine and others’ recommended Preparticipation History and Physical Form, and with the 2007 American Heart Association 12-point screening protocol.

SCDY is a grave public health concern. It is the hope of MDCH and its partners that the work that is being done will help prevent a future “Wes Leonard Story”. For more information about SCDY and Michigan’s prevention efforts, please visit: http://www.michigan.gov/scdy .

March 1, 2012 by Debra Duquette, MS, CGC, Genomics Coordinator & Beth Anderson, MPH, Genomics Epidemiologist, Michigan Department of Community Health