The much-anticipated report also suggests that repeat screenings are necessary to identify and protect more young individuals at risk, with the data indicating that a small percentage (0.08%) of the cohort [when followed up over a period 6 years] went on to experience a serious cardiac event, advocating that more regular screening is required to identify conditions – and that a 'one off' test is not always sufficient.
Funded by the charity and campaigning organisation, Cardiac Risk in the Young (CRY), a team of 25 researchers – based at City St George's, University of London and St George's University Hospitals NHS Foundation Trust - analysed outcomes from more than 104,000 young people aged 14 to 35 (with a median age of 23) who'd had their hearts tested though CRY's nationwide screening programme, across a period of 10 years (2008-2018).
The unique study was the first of its kind to use a systematic follow-up of all screened individuals in order to obtain as complete data review as possible.
The 'game-changing' results of this hugely important paper - published in the prestigious Journal of the American College of Cardiology (JACC) - provide the most comprehensive overview to date of the benefits (and limitations) of cardiac screening in the general population, showing the sensitivity of current testing protocols stands at an impressive 77% with a very low 'false positive' rate of just 2.1%.
And, at a time when the UK's National Screening Committee finds itself under scrutiny for its rejection of proposals to support the implementation of preventive screening programmes for other disease areas (e.g. prostate cancer), charity campaigners and bereaved families hope this new paper will bring further evidence and armoury to the ongoing battle for greater investment into the prevention of young sudden cardiac deaths, and greater access for young people to cardiac screening initiatives.
A key finding from the paper, entitled, "Outcomes of a charity-led Cardiac Screening Programme for Young Individuals in the United Kingdom", concurred with previous data published by CRY funded researchers that one in 300 young people screened and evaluated by CRY's cardiac experts (specially trained in the interpretation of ECG tests) were identified with heart conditions that could have fatal consequences, if left unmonitored and untreated.
Researchers reported that more than 40% (41%) of those diagnosed during the 10-year period, went on to receive significant 'risk-reducing' interventions including implantable defibrillators, pacemakers, cardiac ablation surgery, and, in 2 cases heart transplantation. The remaining cohort identified with cardiac issues, were offered treatment pathways (including medication, monitoring and important lifestyle and exercise advice).
The study highlighted why there needs to be more investment into screening to enable tests to be repeated; the thorough follow up of all those screened showed that 0.08% of individuals who had a normal ECG result at time of their screening were later diagnosed with conditions associated with Young Sudden Cardiac Death (YSCD), including 0.03% (that's one in every 3,333 people tested) who suffered a sudden cardiac arrest or YSCD (on average, 4 years after the original test).
Such conditions may be 'acquired' in time, through external (or even, unknown factor), or present at an older age which again reinforces the urgent need for not only more screening but also greater research into the causes of YSCD.
Young Sudden Cardiac Death (YSCD): it's not just an issue affecting athletes
Historically cardiac screening programmes in asymptomatic individuals have focused on elite athletes [based on the widely acknowledged belief that whilst sport does not cause young sudden cardiac death, it can exacerbate the potential dangers of hidden heart conditions]. However, CRY has been providing screening services in the general population since 1997 and always advocated screening should not be limited to just athletes.
Interestingly, this study found no significant difference in risk between athletes and non-athletes. This clearly raises questions about current screening policies, which - whilst having been largely adopted by most sporting bodies - do not include the general population. Indeed, the majority of participants in the study were not competitive athletes (just 9%) - yet serious conditions were still detected across the cohort.
Lead researcher, Professor Michael Papadakis, Professor of Cardiology at City St George's, University of London and Honorary Consultant Cardiologist at St George's University Hospitals NHS Foundation Trust, said: "This study shows that cardiac screening can save lives. Across a decade of screening in a general population of 14–35-year-olds we identified hundreds of young people with dangerous heart conditions who were able to receive treatment before tragedy struck.
"But it also highlights that a single screening is not enough. Some conditions develop later, and others are very difficult to detect early. So, if we want to further reduce sudden cardiac deaths in young people, we need to develop even stronger and even smarter prevention strategies."
He adds; "Our studies currently focus on expanding numbers and follow-up and, as such, we hope to report on 300,000 individuals in the next 2 years. Importantly we will investigate the impact of Artificial Intelligence (AI) on detecting ECG features suggestive of disease that the naked eye cannot see. AI has the potential to considerably enhance the power and accuracy of ECG as a screening tool to identify young individuals at risk of cardiac arrest – as well as massively upscaling a nationwide screening programme and significantly reducing the associated costs."
Every week in the UK, 12 young people (that is, aged 35 and under) die suddenly from a previously undiagnosed heart condition. In 80% of cases, there will be no symptoms or warning signs, which is why organisations such as CRY believe proactive, cardiac screening is such a vitally important and powerful tool.
CEO of Cardiac Risk in the Young (CRY) Dr Steven Cox adds; "This long-awaited and substantial research paper has clearly shown that young lives can be saved through screening.
"However, it has also highlighted the importance of repeat screening, as not all deaths are prevented by a one-off screening between the age of 14-35. This research has clearly demonstrated it is no longer a question of IF screening saves lives, but now about how many lives screening saves and how to prevent more tragedies.
"We now have the evidence to support our proposition that screening in young people, in the general population, needs to be repeated – as occurs across much of elite sport, with routine cardiac screening being carried out every 1-5 years. Future CRY-funded research will determine the best frequency for screening.
"In Italy, it is mandatory that anyone involved in regular / organised physical activity must have their heart screening regularly, the incidence of sudden cardiac death has decreased by 89%. So, whatever a nation's approach to proactive cardiac screening looks like, we know that screening works.
"What we also know now is that with the advent of wearable smart devices, screening will become accessible to all in the near future. But the AI and ML (machine learning) technology is only as good as the data which feeds the algorithms.
"And that is why CRY is announcing a major push to expedite our research into AI and ML; CRY's 2030 strategic Vision will see the launch of an AI Cardiac Screening and Research Project, translating our knowledge and expertise from the last 30 years."
Professor Sanjay Sharma, one of the world's leading experts in sports cardiology and inherited cardiac conditions – and CRY's Consultant Cardiologist for 30 years; adds:
"Looking back across the past three decades – since the inception of CRY in 1995 - it is hard to imagine that we would reach such a pivotal moment; a study of this magnitude, with the potential to have an impact for so many years to come. This research has shown that screening can identify young people at risk, some of whom have subsequently received implantable cardioverter defibrillators (ICDs) that have saved their lives by correcting dangerous heart rhythms, while others have been identified early enough to undergo lifesaving heart transplantation.
"When we began this journey, few believed it would be possible to prevent sudden deaths in young people but today, the importance of our research is clear, and it points to a future in which many more young lives will be saved. And, it should never be forgotten that this seminal piece of work – along with CRY's impressive portfolio of research is only possible due to the exceptional and tireless fundraising efforts of bereaved families across the UK who somehow manage to see beyond their own grief to do all they can to prevent other families from going through a similar, devastating experience. Thank you."
For more information or to speak to Dr Steven Cox or Profs. Michael Papadakis and Sanjay Sharma, please contact Jo Hudson in the CRY Press on 0770 948 7959 / jo.hudson@trinitypr.co.uk
Jo can also connect journalists with:
- young people who've been identified with a heart condition through CRY's cardiac screening programme and went onto be successfully treated, preventing potentially fatal cardiac arrest
- parents and partners who have suffered a potentially avoidable bereavement caused by a heart condition, when a young person did not have the opportunity to have their heart tested
CRY's nationwide screening programme (which tests the hearts of more than 30,000 young people every year) is currently supported through the fundraising of bereaved families, affected by the tragedy of a young sudden cardiac death. This model is not acceptable and not sustainable
For more information about CRY please visit www.c-r-y.org.uk or to book a screening near you, go to www.testmyheart.org.uk
Notes to editors;
- CRY wants every young person to have the choice to have their heart tested. Anyone between the age of 14 and 35 can now register online for an appointment to have a free cardiac investigation overseen by a specialist. As CRY receives no government funding this is only possible because of the incredible support CRY receives from communities throughout the UK to provide this free service to the public. www.testmyheart.org.uk
- CRY was founded in May 1995. As well as campaigning, lobbying for change and the provision of its subsidised cardiac screening programme for young people (aged 35 and under), the charity also provides a unique bereavement support network and funds an internationally acclaimed research programme.
- Young Sudden Cardiac Death (YSCD) is an umbrella term for several different heart conditions that affect fit and healthy people which, if not treated can result in sudden death
- The CRY screening team tests elite athletes, as well as working with professional sporting bodies including the English Institute of Sport, the RFU, LTA, the FA, England Netball and The English Cricket Board.
- CRY's myheart network offers help, support and information to young people who are coping with a diagnosis of a heart condition. www.myheart.org.uk
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