Call for NHS to review its policy on screening of young people at risk of sudden cardiac death

Guest blog by Dr Steven Cox (from CRY – Cardiac Risk in the Young

The UK’s National Health Service (NHS)  policy – that “screening should not be offered*”  is currently discouraging young people who may be at risk of sudden cardiac death from having simple, non-invasive and potentially life-saving tests.

The National Screening Committee need to review its position which is out of date

It is the view of the charity Cardiac Risk in the Young (CRY) that:

  • All young people (14-35 years old) should be offered the option to have cardiac screening
  • Cardiac testing should only be conducted by specialist cardiologists with the necessary skills and expertise to ensure accurate interpretation of the investigations.
  • The National Screening Committee policy should widen the remit to consider all cardiac conditions that can cause young sudden cardiac death
  • The National Screening Committee policy directly contradicts with the general NHS policy of “prevention”

Can anyone do these tests?

Cardiac screening needs to be overseen by a cardiologist with expertise in this specialist area of cardiology, including; athletes heart, ethnic differences in cardiac adaptation to exercise, and structural/electrical cardiac conditions. Professor Sanjay Sharma is a leading sports cardiologist and CRY’s consultant cardiologist who gives his time to oversee the CRY screening programme.

When a specialist cardiologist conducts the tests the number of false positives and false negatives significantly decrease (i.e. fewer people are told they may have a problem and are subjected to further investigations when they do not have a problem, and fewer people with a problem are given an all clear).

Could the NHS handle so many people wanting testing?

In the current economic era the answer is probably not. Moreover the NHS does not have the infrastructure, including the facilities or the expertise, to immediately implement a national screening programme for ALL young people.

However, CRY is leading the way in training specialist doctors, conducting research and providing educational resources so this will be possible in the future.

Although the implementation of nationwide screening is hampered at this point due to the economic constrains and lack of infrastructure and expertise that does not mean that screening should not be recommended. On the contrary, these limitations should prompt the development of a collaborative scheme between the Government, NHS, charity organisations such as CRY and sporting bodies to provide an initiative to offer cost effective screening.

Is there any evidence from other countries that screening is worthwhile?

In Italy where screening prior to participation in organised sport is mandatory they have reduced the incidence of young sudden cardiac death by 90%. This research has informed international policies that either mandate or recommend cardiac screening prior to participation in organised sport.

The current National Screening Policy is inconsistent with current practice at an elite level in most sports in the UK (including: the Football Association, Lawn Tennis Association, Rugby Football Union, Rugby Football League, Cricket, English Institute of Sport) and the fact that screening is often mandated for athletes when competing outside the UK.

Important Links

Support CRY’s epetition for the UK governement to change their policy on cardiac screening in young people here.

Learn more about the National Screening policy here 

Read Professor Sharma’s team’s response to the most recent National Screening Committee Review here [‘Unlocked’ courtesy of BMJ Group]

Follow CRY on twitter

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Dr Steven Cox is the Director of Screening and Deputy Chief Executive of CRY. Unit 7, Epsom Downs Metro Centre

Waterfield, Tadworth, Surrey.

 

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  • Jonathan Hanson

    Thanks for this intertesting blog giving an overview of the pro-screening position.

    The high profile nature of this debate following recent events in the UK means the media and politicians will also play a role in what happens with asymptomatic screening in the NHS as well as the medics. So it really is imperative that we have a balanced discussion about the pros and cons.

    Two areas that are rarely discussed are the negative impact of screening and informed consent.

    Looking at the well documented pie chart of repsonsible pathology for SACD- we know that only around 60-80% of pathology may be picked up by one off screening. The recent high profile cases in the UK are not good anecdotal evidence for repeated screening, although you wouldnt realise it by the pro-screening media comments subsequently. But certainly screening will miss some of the congential conditions and of course the acquired causes such as post myocarditis.

    Of the commonest conditions – hypertrophic cardiomyopathy for example, this is said to be present in around 1 in 500 of the population, but with an annual risk of death of between 0.6-1% per year. Statistically this means its very common but a lot of people will live a long time or near normal life expectancy without knowing it. Obviously there will be a number identified as “high risk” through risk stratification by experienced Cardiologists – but with an overall risk of 1% per year – this will only be a very small number.

    So what happens to the number that we identify as at risk? (they are of course true positives – even with a low risk of dying).

    Rates of depression and anxiety disorders in young adults following a myocardial infarction are well documented in the literature. My own small observational study that was presented at UKSEM in 2011 suggested that the risk of being turned down for a life insurance product if you failed a population screening test for SACD was up to 50% – 50 times higher than your annual risk of dying.

    So whilst there has been a lot of fantastic progress in the science behind ECG screening, risk stratificiation and epidemiology in recent years, it is important the debate remembers the negative impact on many as we try to idenfity the individuals who we can truely save through a population screening programme.

    Given the high media profile of this subject, especially in the UK national sport of football,  providing true informed consent is going to be difficult going forward. I note the blog refers to sports organisations and their own policy and screening. But focussed screening on small discrete populations of athletes is a different model to widespread population screening. Even in governing body screening there are challenges of informed consent. It would be difficult for an aspiring athlete to make an informed choice if he were told he could never be a professional sportsman if he didnt have this ECG, or if he could not participate in this junior world cup etc. Yet many of these individuals will not go on to be career elite athletes so may be effected by the occupational, financial or insurance restrictions that going through SACD screening may impose upon them.

    Screening for SACD can have a negative impact on an individual that is greater than there risk of dying. Its important we present balanced arguments as to the pros and cons of screening going forward.

    Dr Jonathan Hanson
    Sport and Exercise medicine specialist/ Rural practitioner. Skye.

    Maron BJ. Prevalence of Hypertrophic Cardiomyopathy in a General Population of Young Adults. Circulation. 1995;92:785-789

    Elliott PM, Gimeno JR, Thaman R, et al. Historical trends in reported survival rates in patients with hypertrophic cardiomyopathy. Heart. 2006;92:785-791.
    Thornton EW et al. Anxiety, Depression and Myocardial Infarction: A Survey of Their Impact on Consultation Rates Before and After an Acute Primary Episode Br J Cardiol. 2006;13(3):220-224.Thornton EW et al. Anxiety, Depression and Myocardial Infarction: A Survey of Their Impact on Consultation Rates Before and After an Acute Primary Episode Br J Cardiol. 2006;13(3):220-224.