Official Launch Of The Heart Institute's Adult Congenital Heart Programme

17 Jan 2004

By Dr Balaji Sadasivan

Venue: National University Hospital Auditorium

I am pleased to be here today at the official launch of The Heart Institute's Adult Congenital Heart Programme. The primary mission of The Heart Institute (THI), which was set up in May 2001, is to provide integrated and good quality cardiac, vascular and thoracic services for patients in the National Healthcare Group. I am pleased to see that THI has achieved much despite its short history, and the launch of this programme marks another significant milestone for this Institute.

Adult Congenital Heart Disease - A Growing Problem

With the extraordinary advances in cardiac surgery, paediatric intensive care and non-invasive diagnosis over the past 50 years, the survival of children with congenital heart disease (CHD) has dramatically improved. In fact, it is estimated that as many as 85% of these patients can now expect to reach adulthood. In Singapore, there are an estimated 11,000 adults with congenital heart defects and this number is expected to grow each year with advances in surgical techniques and medical treatment. At least half of these adult patients will continue to be at moderate to high risk of future complications and premature death due to their condition, and require ongoing follow-up and treatment by healthcare professionals.

Many of these patients continue to be to be looked after by paediatric cardiologists, while some are followed up in the general adult cardiology clinic. Research has shown that outcomes of adult congenital heart disease (ACHD) patients cared for in specialized ACHD centres are better than outcomes for those cared for in non-specialized units. This can be attributed to the fact that most adult cardiologists have not undergone the formal specialised training required to care for these complex patients, while many paediatric cardiologists are similarly not trained to manage problems in adult congenital heart disease patients like ischaemic heart disease, arrhythmias, and problems related to pregnancy.

Adult Congenital Heart Disease (ACHD) Programme

To address this gap, the Ministry of Health has committed $855,000 in funding over 3 years, under the Health Service Development Programme, to establish the Adult Congenital Heart Disease (ACHD) Programme. The aim of this programme is to provide optimal and continued care for adults with congenital heart disease, and ultimately improve the long-term survival and quality of life of ACHD patients. Under the programme, ACHD patients would be managed in specialised ACHD clinics by a multi-disciplinary team with special expertise and training in all aspects of complex congenital heart disease, including the management of pregnancy in these patients. Specialised services like pregnancy and genetic counselling, pulmonary hypertension management, cardiopulmonary testing, Marfan screening and non-invasive closure of patent ductus arteriosus (PDA) and atrial septal defects (ASD) will also be provided.

The programme has already gotten off to a good start. Three hundred and five (305) ACHD patients were seen at the NUH ACHD clinic in 2003 and 15 device closures of atrial septal defects have so far been performed. The pregnancy counselling and Pulmonary Hypertension services and Marfan Screening Clinic have also started operations.

Besides medical treatment, patient education plays a very prominent role in the ACHD programme and rightly so. Many patients with congenital heart disease have very little understanding of their condition, sometimes as a result of shielding from well-meaning family members. All patients in the ACHD programme are given a patient care memo which provides comprehensive information about their condition in an easy-to-understand form. Nurse co-ordinators are also available to provide advice on important issues like insurance coverage and job suitability as well as monitor the progress and outcomes of all patients in the programme.

The Important Role of GPs

Aside from cardiologists, primary care physicians have a key role to play in the management of ACHD patients as well. Half of all ACHD patients are low risk and can be managed more cost-effectively at the primary care level. Many ACHD patients also depend on their GPs for advice on travelling, exercise, endocarditis prophylaxis or their contraception options. In recognition of this, one component of the ACHD programme involves providing continuing medical education to health professionals, both specialists and GPs. THI will continue to work through its GP Partners' Programme to provide practical and authoritative information on ACHD to interested professionals. The Institute will also continue to build collaborative links with other organisations, both public and private, to share common resources and programmes in the care of ACHD patients.

Conclusion

Many patients with congenital heart disease are lost to follow-up due to ignorance or apathy. Some may have been told that they only had "mild defects" as children and thus did not require further follow-up. Others consider themselves "cured" following surgery. However, this situation may not remain static because of physical or physiological changes over time. Hence, patients with congenital heart disease need to be re-evaluated once they reach adulthood. They also need to do this at a centre that is familiar with the care of congenital heart disease and with their specific needs. With the launch of The Heart Institute's ACHD programme, I am confident that the needs of this group of individuals can now be met. I also hope that the Programme can strive towards becoming a regional centre for adult congenital heart disease, and further build on our aspirations to become a regional medical hub.

Thank you.