Adult congenital heart disease (ACHD) teams specialise in the diagnosis and management of patients with congenital cardiac lesions throughout their adult life from the age of 16-18. If diagnosed and followed in childhood, teenage patients will be transitioned from the paediatric team to the adult team over a period of several years. Specialist transition teams facilitate the process of a young person learning to become increasingly independent in terms of their understanding and management of their own heart condition and health issues. 

In addition to patients transitioning from paediatrics, ACHD specialists see newly diagnosed cases of congenital heart disease in adults which are often more minor conditions such as atrial septal defects.  

The ACHD team includes cardiologists, specialists in imaging, interventionists, surgeons, clinical nurse specialists, intensive care doctors, anaesthetists and a whole range of other specialists with knowledge of congenital heart disease. The team cares for patients with all degrees of disease severity - although patients with simpler lesions may be cared for nearer to home by their local cardiologist who has an interest in ACHD. 

Specialist surgical ACHD centres (so called Level 1 centres) offer care for all aspects of adult congenital heart disease including congenital cardiac surgery and percutaneous intervention.  In some areas there are also non-surgical specialist cardiology ACHD centres (Level 2). These offer many aspects of care but do not operate on patients or do percutaneous intervention.  The final type of ACHD centre is the local centre (Level 3). These local centres may host joint specialist clinics with the specialist centres and will care for patients with less complex disease.

The structure of adult congenital heart disease services underwent a long period of review and there are now agreed standards for the three levels of care providers¹. These standards aim to ensure the best care for all patients with congenital heart disease. In addition to the core ACHD team the standards describe the optimal models of care for other healthcare providers such as the High Risk Pregnancy service for ACHD, anaesthetic care, dental care, psychological care and palliative care. 

As patients with ACHD are aging, care is becoming more complex. The leading causes of hospital admission are heart failure and arrhythmia. Centres are now developing specialist clinics in complex rhythm problems, device management, advanced heart failure management and ACHD transplantation to meet these needs. 

Training in ACHD is part of the core curriculum of training in adult cardiology². Each general cardiology trainee is expected to complete a minimum of 2 weeks of ACHD training rotation in a specialist centre, to attend specialist training days and to complete an online training course³. A trainee intending to be a specialist cardiologist in adult congenital heart disease should expect to undertake 2 years of subspecialty ACHD training. A trainee intending to be a cardiologist with a special interest in ACHD in combination with another area such as imaging should expect to spend the equivalent of 1 year in subspecialty ACHD training⁴.

The British Congenital Cardiac Association and the European Society of Cardiology produce guidelines for the practice of adult congenital heart disease⁵.

Excellent resources also exist for patients including the main UK patient association – The Somerville Foundation (www.thesf.org.uk) and the British Heart Foundation (www.bhf.org.uk)   who produce educational information about congenital heart disease in adulthood.  In recent years there have been many new high quality international online resources for clinical staff and patients – these include the USA patient association (www.achaheart.org) and the Nevil Thomas library (www.achd-library.com).

1. NHS England congenital heart disease standards

2. Training standards for adult cardiology

3. Online ACHD core curriculum course link

4. Training for a career in adult congenital heart disease in the UK

5. European Society of Cardiology GUCH (ACHD) Clinical Guidelines.