Sudden unexpected cardiac arrest occurring outside the hospital (OHCA) strikes 295,000 Americans of all ages each year (1). Unfortunately, OHCA survival rates have languished at a dismal 7% for decades (1).
OHCA is the third leading cause of death in the U.S. behind all cancers and other heart conditions (1).
A vast body of research has proven that certain critical interventions profoundly improve the odds of neurologically intact survival and minimize future life-threatening risks.
These include the following:
• Screening to detect heart conditions before OHCA occurs
• Early intervention with CPR or chest compressions and use of automated external defibrillators (AEDs) when it occurs
• Use of state-of-the-art treatments, including mild therapeutic hypothermia and implantable cardioverter defibrillator (ICD) therapy, after it occurs.
The evidence is unequivocal and keeps mounting. A recent landmark study by the North American Resuscitation Outcomes Consortium, for example, found that survival rates jump from 7% to 38% when bystanders overcome apprehension and use AEDs to help save lives (1). "This study shows in a dramatic way that the use of AEDs by bystanders is a very potent indicator of survival,” says principal investigator, Myron Weisfeldt, director of the department of medicine at Johns Hopkins Medical Institutions.
So, why is survival from OHCA still the exception, rather than the rule? The fact that OHCA is not a reportable condition may well be a major contributing cause. Surprisingly enough, after decades of trying, no national reporting system routinely captures OHCA incidence and outcomes.
While information related to other conditions, such as communicable diseases and birth defects, is collected regularly, and while there is a voluntary system for reporting in-hospital cardiac arrest, OHCA remains the red-headed stepchild—an issue that is largely ignored (1).
Making OHCA a reportable condition may be the single most important thing we can do to improve survival. "Current health surveillance systems cannot determine the burden of acute cardiovascular illness in the prehospital setting, nor make progress toward reducing that burden without improved surveillance mechanisms," according to a 2008 American Heart Association (AHA) Scientific Statement on the topic (1). "If we cannot measure sudden cardiac arrest American Resuscitation Outcomes Consortium, we will never be able to improve processes and outcomes," says Graham Nichol, MD, MPH, FAHA. For this reason, the Sudden Cardiac Arrest Coalition (SCAC) an ad-hoc group of 43 national organizations, including the Sudden Cardiac Arrest Foundation, called upon Congress on October 5 to 'move the needle forward' and make OHCA a reportable condition.
"We cannot fix what we do not measure," says Lance Becker, MD, Professor of Emergency Medicine and director of the Center for Resuscitation Science at the University of Pennsylvania, in his remarks during the Congressional briefing. "Until we bring the needed resources, research and national standards for data collection to the forefront, we won't know for sure what works, what doesn't and why."
While no mandatory national system for reporting OHCA currently exists, multiple initiatives to make it a reportable condition are underway. One such initiative is the National EMS Information System (NEMSIS), an effort launched in 1973 to collect EMS data including OHCA, which has participants from 52 states and territories.
North Carolina EMS Medical Director Greg Mears, MD, FACEP, says OHCA is a standard national data element, which should be collected on every EMS event. "If out-of-hospital cardiac arrest was declared a reportable condition," says Mears, "the most efficient and practical way to document and collect the required information would be through the use of EMS electronic medical records based on the NEMSIS standard."
Another initiative is the Cardiac Arrest Registry to Enhance Survival (CARES), which started in 2004 as a cooperative agreement between the Centers for Disease Control (CDC) and the Emory University School of Medicine. The CARES program uses a standardized data collection system that consolidates essential data elements in its aim to identify and evaluate OHCA incidents. This system is now being used in multiple locations across the U.S., including Atlanta, Las Vegas, Boston and Washington, D.C.
"We have always supported the concept of OHCA becoming a reportable condition," said Bryan McNally, MD, MPH, principal investigator. There are now 20,000 cases in the CARES registry, half of which were collected in the last year alone. Survival rates are slightly higher than the national average—about 8%.
While the CDC doesn't have the authority to make reporting mandatory, it can influence reporting standards, says Michael Sayre, MD, associate professor at The Ohio State University and chairman of the AHA Emergency Cardiovascular Care committee. The Cloverdale Stroke Registry, funded by the CDC, for example, requires states to report back to the CDC about stroke incidence and outcomes. In addition, some states are required to report incidence of cancer, says Sayre.
Few states, however, consider OHCA a reportable condition. However, the Office of EMS in North Carolina maintains a statewide EMS database that includes OHCA data, and the Arizona Department of Health Services' Save Hearts in Arizona Registry and Education program also collects such data. In addition, Washington has introduced legislation that will foster OHCA reporting.
One way to promote awareness of OHCA reporting could be to gain the support of the Centers for Medicare and Medicaid Services (CMS), so that EMS agencies and hospitals could report OHCA cases directly to Medicare. Congress, in turn, could ensure that reports are submitted and evaluated. "Perhaps the SCA Coalition could figure out a way to get Medicare to issue a requirement that EMS and hospitals publicly report outcomes from cases of ventricular fibrillation, for example," says Sayre. Another alternative is a "pay for performance" model, through which agencies would be paid to report incidences and outcomes, Sayre says. Higher survival rates would yield higher payments with this type of a system.
Meanwhile, the Council of State and Territorial Epidemiologists (www.cste.org) determines at the state level the conditions that should be made reportable events. CTSE’s current list of reportable conditions includes cancer, anthrax, HIV, hepatitis, polio, SARS, rabies in a human, smallpox, malaria and plague.
"We may need some element of public reporting," says Sayre. "In my opinion, we need to let the public know how their community is doing, compared with others. Creating a 'community report card' may be the thing we need to generate change."
McNally agrees. "Tracking SCA performance measures provides a community with a starting point to help strengthen ‘the chain of survival’ and ultimately improve survival."
In Nichol’s view, the issue is a problem that requires a strategic solution. "Sudden cardiac arrest is a major public health problem," he says. "There is a 500% variation in outcomes. This suggests we can do better."
"We can improve survival rates," says Becker, "and with the help of our policymakers, we can make a real, national impact on a major public health problem that hasn’t changed in 30 years." The challenge is to determine how to establish a nationwide surveillance system that protects patient privacy, which agency should manage the system and enforce compliance and perhaps the biggest hurdle—how to pay for it.