SADS Foundation's
Position on Screening to Prevent Sudden Death (9/2009)
Each year, several thousand infants, children, adolescents,
and young adults die suddenly and unexpectedly.For most, a meticulous medico-legal autopsy will identify the cause. In
about one-third of these tragic sudden deaths, the "killer" eludes detection
and the death is classified as "autopsy-negative sudden unexplained death."The SADS-related genetic heart diseases of
long QT syndrome (LQTS), catecholaminergic polymorphic ventricular tachycardia
(CPVT), Brugada syndrome (BrS), and short QT syndrome (SQTS) are the likely
cause of death in many of these cases. These heart conditions (also known as
"cardiac channelopathies") affect about 1 in 1000 people and are highly
treatable.
So, can we screen for these channelopathies and thereby
prevent tragic occurrences of sudden death?The answer is "yes."In fact, we
are screening for these diseases and indeed sudden deaths have been
prevented.At the SADS Foundation, we
recognize that perhaps 50% of the sudden death victims had preceding "warning
signs." Proper recognition of such
warning signs could reduce the number of sudden deaths significantly
overnight.Accordingly, the SADS Foundation
strongly advocates for SCREENING programs (general health exams, pre-sports
participation physicals) that would probe for the presence of such "warning
sign s" as exercise- or auditory-triggered fainting/seizures and family history
of premature sudden death < 40 years of age or unexplained accidents/drownings.The SADS Foundation is also actively involved
in trying to decrease the "knowledge gap" that exists among health
professionals by increasing the awareness of and respect for the cardiac
channelopathies.
For the other 50% where the sudden cardiac arrest was truly
the individual's and their family's first event, there are only two ways to
prevent their tragedy - rapid access to automatic external defibrillators
(AEDs) allowing immediate life-saving therapy and universal
electrocardiographic (ECG) screening.The SADS Foundation fully supports school-based and community-based CPR
and AED programs.Whether at the airport
or at the athletic field, lives are being saved by effective bystander response.
In terms of ECG screening, this is a very complex issue.The SADS Foundation strongly believes that a common,
potentially lethal and highly treatable condition like LQTS DESERVES screening to
be able to diagnose and treat it before an event occurs.However, not every patient would present with
a diagnostic ECC and currently, there are serious technical and logistical
challenges that preclude the use of ECG as a robust tool for universal ECG
screening.Because of this, the SADS
Foundation advocates for research funding to enable the appropriate scientific
and "real world" studies that are necessary to determine most effective and
efficient methods of ECG screening for LQTS. Our patients and families deserve such a
concerted effort.
The bottom line – the SADS
Foundation’s position on screening to prevent sudden death is “Yes we should,
Yes we ALREADY are, Yes we need to do it better
