Young at risk of sudden death syndrome by Judy Hobson

The Times - 20th August 2002

Sudden Death Syndrome claims up to eight young victims every week in the UK. New research, to be published in The Lancet, shows that this figure may be a conservative estimate. Sporty youngsters who put stress on their heart are most at risk if they have an underlying heart problem.

Victims include the footballer Daniel Yorath, 15, son of the former Leeds star Terry, who died playing soccer in the garden with his dad, junior international footballer John Marshall, 16, and international bodybuilder Andy Hornby, 23, who died during a Mr England contest.

The main cause of SDS is hypertrophic cardiomyopathy, an abnormal thickening of the heart muscle which research shows is present in 1 in 500 people, equal to more than 100,000 people in the UK. The majority of sudden deaths among the young are due to inherited forms of heart muscle disorder and irregular heartbeat. Some people have no symptoms and SDS is the first appearance of the condition. Where symptoms do occur they can include shortness of breath, chest pains, palpitations, light-headedness and blackouts. Sudden death in people over 30 is caused predominantly by coronary arterial disease — the furring of the arteries.

Health campaigners believe that electrocardiogram testing of post pubescent children could help to detect young heart disease and prevent SDS. ECGs are painless, non-invasive and can detect up to 97 per cent of heart muscle disorders. For the past two years Cardiac Risk in the Young (Cry), the charity founded in 1995 by the former Wimbledon tennis player Alison Cox, has been carrying out ECG testing on youngsters in clinics across the country. This summer the first testing of state school pupils took place during a pilot project in the Western Isles, where 300 teenagers aged 14 to 18 were tested. Thirteen are being followed up with echocardiograms and ultrasound scans. In a few months a further pilot project is planned in the Home Counties.

On average 4 per cent of those screened need further investigation. If a positive diagnosis is made the patient may have to change his lifestyle; be given drugs to ameliorate his symptoms; have a defibrillator the size of a cigarette lighter implanted; or undergo surgery.

Dr Sanjay Sharma, consultant cardiologist at University Hospital, Lewisham, South London, and Professor William McKenna, of the Department of Cardiological Sciences at St George’s Hospital Medical School, Tooting, South London, are researching the causes of sudden death in young people. “Having dealt with the bereaved relatives and seen the pain they go through, I believe it is our duty to try to convince the Government that ECG screening should be available to all adolescents before they leave school. It is quick and simple and can reveal underlying problems with the heart,” Sharma says.If introduced for teenage schoolchildren it would mean that 600,000 ECGs would be carried out every year. The Government’s National Screening Committee does not yet approve of cardiac screening for young people. Dr Muir Gray, its programmes director, says: “We must have proper evidence before we introduce such a programme. It took ten years to sort out cervical screening after it was introduced without proper research evidence.

“It is not a question of money. It is a question of having the right evidence on which to make our decision. In all screening there is a grey area between what is normal and abnormal and we have to learn how to accurately interpret this.”

In Italy annual cardiac screening is mandatory for young people participating in representative sport, including schoolchildren. The British, in piecemeal fashion, are following suit. Since April anyone interested in sport, not just elite athletes, have been able to be screened at Cry’s Centre of Sports Cardiology based at the British Olympic Medical Centre at Northwick Park Hospital, Middlesex. This is the first centre in the world dedicated to the cardiac evaluation of athletes. The consultant cardiologists are McKenna, Sharma and Dr Nigel Stephens.

Dr Greg Whyte, the research manager at BOMC and chairman of Cry, says: “It is quite a coup to get this link between cardiology and sport. We see it as identifying health by demonstrating that sportsmen’s hearts can cope with their workload.

“My hope is that profiling, including muscular-skeletal development as well as cardiac screening, will become mandatory within five years.”

When Alison Cox started Cry she was faced with scepticism. Some GPs still hesitate about putting Cry’s leaflets in their surgeries. They claim that they frighten people. But, Cox counters, the British are not prone to panic and would prefer to have the facts.