Medical Independent Supplement
Wednesday 1ST December 2010
Making Moves to Help Young People With Heart Problems
Judith Leavy reports on the first year of operation of the Centre for Cardiac Risk in Younger Persons operating at AMNCH in Tallaght.
Death rates due to heart disease have been on the decline over the last decade. With the majority of cases being associated with coronary artery disease, health services have been developed to address specific disease prevention and management issues.
In young people, where sudden cardiac death (SCD) occurs more commonly because of underlying structural or electrical problems, often these diagnoses are not made in time. Most of these inherited cardiac conditions can be diagnosed with relatively simple cardiac investigations. Traditionally, the availability of these investigations and the expertise to interpret the results has varied considerably across hospitals in Ireland, with some hospitals having waiting lists of one or two years. Multiple visits were often necessary, even in the private sector. There was a lack of co-ordination of these services for families considered at risk, and nowhere to turn to for families considered at risk, and nowhere to turn to for families who had lost a young person to SCD for information and assessment.
The Centre for Cardiac Risk in Younger Persons (CRYP) at AMNCH, Tallaght was developed to address these issues and provide a co-ordinated specialist service. The CRYP officially opened on November 10th 2008.
Patient activity
Last month, the Centre published its first annual report which shows that, in the first year of operation the CCRYP evaluated 1,380 individuals from 26 counties, ranging in age from 3 to 75 years.
A total of 1,380 ECGs were performed along with 1,100 echos and 1,000 exercise tests. Almost 750 patients were given a heart monitor to wear for 24 hours.
A quarter of the patients seen at the Centre were referred as a direct result of the death of a close relative from definite or possible inherited cardiac disease.
A further 30 per cent were referred because of a family history of inherited cardiac disease where death had not occurred. Ten per cent of patients were known to have cardiac conditions and were referred for special management. Almost one-fifth were young people with no family history but who had experienced worrying symptoms such as unexplained blackouts, palpitations or who experienced unusual chest discomfort or shortness s of breath with exercise.
More than 50 per cent of the patients at the CRYP were confirmed to have normal cardiac function with no significant risk of sudden death after one visit. A smaller number of patients required additional testing before they could be confirmed as unaffected.
Members of families where the inherited cardiac disease only becomes apparent with increasing age were asked to return on an annual basis, at least throughout puberty.
In about 10 per cent of patients who had been referred because of a family history of definite or possible cardiac disease, a cardiac problem was identified. According to the CRYP’s first annual report, not all of these patients were themselves at high risk of sudden death.
The management of these patients ranged from medication, advice on lifestyle and, in a small number who were identified as being at risk of sudden cardiac death, implantation of a cardioverter defibrillator.
Where appropriate, patients or families were referred to the National Centre for Medical Genetics to look for the specific genetic cause of the cardiac condition.
Unfortunately, according to the report, even in carefully selected cases, the exact genetic cause of the condition was successfully identified in approximately 50 per cent of cases but the identification of genetic changes in a number of families was reported.
The Future
The success of the CCRYP initiative to date has resulted in growing demand for the service.
According to the annual report, demand for services has increased with a small waiting list for more routine evaluations emerging, but those with symptoms can generally be seen on the next working day, if available. To continue the service, AMNCH has extended the contract for Dr. Deirdre Ward, Consultant Cardiologist and Director of the Centre.
The Centre currently holds a clinic twice monthly at St. James’s Hospital. However, the annual report states that the services at St. James’s are heavily reliant on support services at St. Vincent’s Hospital and the CCRYP is currently examining the possibility of developing a satellite clinic a the latter in the next 12 months.
In the coming year, the CCRYP also plans to purchase additional monitors for those with infrequent but concerning symptoms, and also to contribute (along with colleagues in the Mater Hospital Family Heart Screening Clinic and Our Lady’s Children’s Hospital in Crumlin) to the funding of a dedicated cardiac genetics counsellor to reduce the waiting time for genetic testing from 12 months to a matter of weeks.
The Centre expects an expansion in demand for CCRYP services, estimating that more than 1,500 patients will be seen at t the Centre in the next 12 months. The cost of maintaining the current standard of service over the next three years is estimated to run close to €1 million.
CCRYP – the timeline
- In 2004, Dr. David Mulcahy and colleagues at AMNCH, Tallaght, and St. James’s Hospital, together with the Board of Tallaght Hospital, signed an agreement with the charity Cardiac Risk in the Young (CRY Ireland) to set up the CCRYP.
- In January 2007, Consultant Cardiologist dr. Deirdre Ward was appointed Director at the Centre.
- Because of the anticipated delay in delivering the planned new building for the Centre, a purpose-built prefabricated building was purchased and configured to the specifications of Dr. Ward and Dr. Mulcahy.
- As a ‘virtual’ centre operating in the main Cardiac Department of AMNCH, more than 800 patients from 350 families were seen.
- On Monday November 10th 2008, the Centre for Cardiac Risk in Younger Persons was officially opened. The centre was equipped with state-of-the art investigative equipment and five additional full-time staff members were appointed: a clinical research fellow/cardiac registrar, a specialist nurse, two cardiac technicians and an administrative officer.
Judith Leavy, Clinical Journalist
Medical Independent