In the fourth of the NFWI resolutions to be presented to Sotonettes members for ballot, the prevention of sudden cardiac death in young adults in the UK is discussed.

 

Sotonettes members are entitled to vote on this issue; for more information, click here, or download a handy booklet here. Or visit our Facebook page!

“Every week in the UK at least 12 apparently fit and healthy young people die suddenly from undetected cardiac abnormalities. The majority of these deaths are preventable. This meeting urges Her Majesty’s Government to put in place a national strategy for the prevention of young sudden cardiac death to ensure that all young people between the ages of 14 and 35 have access to heart screening by appropriately qualified professionals to identify any potentially life-threatening conditions.”

Proposer’s position

The proposer’s intention is to prevent sudden cardiac death in young people through the implementation of a national prevention, treatment, and research strategy. This includes providing access to heart screening technologies.

Outline of the issue

Young sudden cardiac death (YSCD) is usually defined as ‘death occurring within one hour of the onset of symptoms in a young person without a previously recognised cardiovascular abnormality.’[1] In various forms it is also known as Sudden Arrhythmic Death Syndrome (SADS), Sudden Cardiac Arrest (SCA), Sudden Infant Death (SID), or Sudden Unexplained Death (SUD).  For the purposes of this briefing the condition will be referred to as YSCD.

YSCD is one of the biggest killers of young people in the UK; 12 British people between the ages of 14 and 35 die every week from these ‘hidden’ heart complications, often demonstrating no symptoms prior to their death. Indeed a leading cardiologist in Australia explained that in half of the cases of YSCD the ‘first sign of something wrong is when they die.’[2]

The underlying causes of YSCD are fundamentally different than those of sudden cardiac arrest in older adults, which is one of the biggest causes of fatalities worldwide and is responsible for approximately 100,000 deaths in the UK each year. Myocardial infarction, also known as a heart attack, and coronary artery disease are two of the principle underlying causes of sudden cardiac death in adults over 35. For both of these many underlying causes are preventable and linked to lifestyle, rather than genetic predisposition or inherited characteristics. Many cases of heart attacks do not lead to sudden cardiac arrest.

This is markedly different from the underlying causes of YSCD, which are overwhelmingly genetic and do invariably lead to sudden cardiac arrest and then death. Unlike in cases of cardiac arrest solely, the heart does not fail due to a lack of blood supply. Rather, many cases of YSCD result from an inherited predisposition for muscular heart disease or disease of the electrical circuits of the heart, such as an arrhythmia.

It is estimated that in the UK there are over 200,000 young people living with these heart abnormalities, usually unaware and asymptomatic. YSCD is usually precipitated by intense physical activity, although it can strike those who are sedentary. YSCD has been sensationalised in the media because of its rarity and the fact that it strikes famous athletes at the prime of their life while they are playing sport. An example of this is the 2012 case of Fabrice Muamba who nearly died on the football pitch in front of a global audience.

National Prevention and Treatment Strategy

There is currently no national strategy in place for diagnosing, treating, or researching YSCD, which means that those who thankfully survive an attack or those diagnosed with a heart problem often face confusing or contradictory advice on how they should get treatment and the families of those that have died from YSCD are often left with no answers or bereavement support. The campaigning group Cardiac Risk in the Young (CRY) is calling for a national strategy to be implemented to combat YSCD and synchronise government policy on the disease, a four pronged strategy consisting of screening, support, awareness, and research.[3]

The utility of a national screening programme or one directed solely at athletes to detect those with heart abnormalities remains the subject of much debate.[4] Campaigners argue that a large proportion of these deaths can be prevented as these heart abnormalities can be detected by an electrocardiogram (ECG), a non-intrusive test that evaluates the electrical and muscular functions of the heart. Screening young and ostensibly healthy people will pick up minor abnormalities in around 1% of the population and serious, potentially life-threatening abnormalities in .3% (almost one in three hundred) of the population. CRY recommends that screening be made available to every fourteen year old and they cite the national Italian screening programme (in place since 1971) which has reduced the rate of YSCD by 89% among those involved in competitive sport as proof that screening works.

However, detractors argue that both the efficacy and feasibility of a screening programme to detect YSCD remains in doubt and, therefore, should not be implemented. They further allege that the Italian case is predicated on faulty data.[5] Instead, many argue that screening not only does not detect all heart abnormalities, but actually has a twenty per cent false positive rate.[6] Further, they argue that screening is extremely cost-inefficient. For example, the American College of Cardiology concluded that conducting electrocardiographic screening of all young competitive athletes in the US could cost up to $69 billion over a twenty-year period and save 4,813 lives, making the cost per life saved between ten and fourteen million dollars.[7] Further studies in the United States have concluded that there is no direct evidence that an ECG or any other cardiovascular screening programme will reduce the incidence of YSCD in any of the ‘at risk’ populations.

This position is supported by the National Screening Committee with their July 2015 recommendation that a universal screening programme for the young not be implemented because:

• ‘There are a number of uncertainties over the test, the conditions that cause SCD, and the overall benefit of identifying those at risk when weighed against the potential harms.
• There is very little research into the reliability of the tests for identifying those at risk of SCD
• There is no agreed treatment or care pathway for supporting those who have been identified at risk of SCD.’[8]

The National Screening Committee will review this decision in 2018/2019. This decision has been met with dismay by campaigners, advocates of screening, and some paediatric cardiologists who argue that doing nothing is not an option. Advocates for screening also argue that the NSC recommendation is fundamentally at odds with notable bodies, such as the European Society of Cardiology, which recommends mandatory screening for athletes. Following the tragic July 2015 death of footballer Junior Dian from YSCD, sports minister Tracey Couch stated in Parliament that she would be examining a prevention strategy that included screening.

Arguments for the resolution

• Many of the barriers that the National Screening Committee have identified can be overcome; now is the time to act before the 2018/2019 review of screening policies to build the robust evidence base and treatment and care pathway that the Committee identifies as necessary.
• These tragic deaths are preventable; is doing nothing really an option?
• Other nations like Italy and Israel have instituted screening programmes. Even though the United States does not have mandatory screening, it does have a system in place for detecting at risk individuals involved in athletics. The UK must explore options along these lines to prevent the needless deaths of young people.

Arguments against the resolution

• The National Screening Committee has just recommended against a national screening programme to detect SCD in July 2015. This resolution directly contravenes current government policy that will not change until the 2018/2019 review.
• Although these deaths are tragic and senseless, they are miniscule in comparison to those who perish from other heart diseases. Might the WI have a greater impact campaigning on wider heart health issues?

Groups to contact for further information

Cardiac Risk in the Young

Unit 1140B The Axis Centre, Cleeve Road, Leatherhead, KT22 7RD

Tel: 01737 363222

cry@c-r-y.org.uk

www.c-r-y.org.uk

@ CRY_UK

 

British Heart Foundation

Lyndon Place, 2096 Coventry Road, Sheldon, Birmingham, B26 3YU

Tel: 020 7554 0000

www.bhf.org.uk

@TheBHF

 

UK National Screening Committee Secretariat

Floor 2, Zone B, Skipton House, 80 London Road, London, SE1 6LH

Tel: 020 3682 0890

www.gov.uk/government/groups/uk-national-screening-committee-uk-nsc

 

References:

[1] M Montagnana, G Lippi, M Franchini, G Banfi, GC Guido. “Sudden Cardiac Death in Young Athletes.” Internal Medicine 47, no. 15 (2008): 1373-1378.

[2] “Sudden Cardiac Arrest: Up to Five Australians under 35 die each week” www.theguardian.com/world/2014/aug/12/sudden-cardiac-arrest-up-to-five-australians-under-35-die-each-week

[3] Their national strategy objectives were outlined in their 2015 election manifesto: www.c-r-y.org.uk/wp-content/uploads/2015/04/Manifesto.pdf

[4] More a comprehensive overview of some of the recent evidence and literature pertaining to screening for SCD see: Mark S. Link and N.A. Mark Estes III, “Sudden Cardiac Death in the Athlete: Bridging the Gap Between Evidence, Policy, and Practice,” Circulation 125 (2012): 2511-2516 circ.ahajournals.org/content/125/20/2511.full.pdf+html

[5] Critics argue that the Italian study does not definitively prove that sustained use of ECG screening is effective. Principally, they argue that the methodology of the study is flawed because it was not a controlled comparison of screened versus unscreened populations, but was a population based observational study and also did not compare ECG screening to non-ECG screening methods, such as physicals.

[6] British Heart Foundation, “Policy Statement: Cardiac Screening for Professional Athletes”: www.bhf.org.uk/~/media/files/publications/policy-documents/policy_statement_screening_of_athletes_external_sep2013.pdf

[7] A Halkin, A. Steilvil, R. Rosso, A. Adler, U Rozovski, S. Viskin, “Preventing sudden deaths of athletes with electrocardiographic screening: what is the absolute benefit and how much will it cost?,” Journal of the American College of Cardiology 60, no. 22 (Dec. 2012): 2271-6.

[8]  National Screening Committee Recommendation on Screening:        legacy.screening.nhs.uk/suddencardiacdeath