Grown up Congenital Heart Disease and the Paediatric Cardiologist Dr J Lawrenson Paediatric Cardiology Service of the Western Cape Workshop on Paediatric Cardiac Services in South Africa 22/11/2007

Old joke How many psychologists does it take to change a lightbulb? Just one – but the lightbulb must want to change!

Do you have a separate clinic for patients with CHD? Do you have a combined clinic with paeds? Given the clinical load do you think that you will ever have a separate CHD clinic? Do your specialists in training need extra training in CHD? Do you have an adult cardiologist with expertise in your unit? Questions

Answers 6/7 questionnaires returned 1 unit part-time expertise/1 unit somatic knowledge All recognised need for extra training 1 unit had a separate clinic All felt overwhelmed by load 2 felt that combined clinics might be possible in the future

The load No idea Data from Wren (Heart 2001) – 200 patients per live births enter ACHD group every year – estimate for SA ops per annum SA – 1/3 will need follow up – 400 patients Patients > 16 – low mortality rate – pool grows

Burdens Complex physiology Need for repeat operations Emotional /intellectual issues Poor understanding of disease Poor understanding of need for follow- up by patient Different follow-up model – adult colleagues

Consequences of poor follow-up Poor treatment of symptomatic patients- eg. Fallots presenting too late Poor advice concerning childbearing and contraception Poor advice to colleagues for non- cardiac anaesthesia risks Inappropriate insurance advice

Follow-up by Paediatrician Continuity an advantage Patient of 25 is a different being Paed – only has a rough idea of other cardiac issues/general medical issues (may be countered by experience) In State practice – practitioner forced to move patient to adult clinic

Separate ACDH centres in SA? Population – sufficient European Review – 500 patients seen per annum – opd; 42 ops; 50 admissions Total numbers seen at GSH Private practices vary – from IHD factories to non-invasive to EP Private – liaison with Adult cardiologist/EP possible

Median 500 patients ( ) 50 admissions (5-450) 42 surgeries

No ACHD centres/ who cares? Adult cardiogists – trained to look after young/pregnant patients with valvular disease Adult CHD presenting in adulthood- not that difficult Poor understanding of post op/parallel circulation Transition – likely to remain a peripheral issue

Transitions Prepare early for transition – make formal plans A late transition may be beneficial (Reid et al Pediatrics 2004) Make the referral from adult to cardiac units easier (build trust; need good secretarial skills) National database/self carried paper record

If all adolescents needing specialized adult care continued to receive pediatric care throughout adolescence and were provided clear, simple information regarding where and when they should go for adult follow-up, dramatic improvements in transfer may occur.

If dialogue fails, how about infiltration? (How do we increase core knowledge?) Sleepers – EP specialists; MRI specialists Less subtle – surgeons! Despite the time constraints – combined clinics may be useful

Conclusion We better do something – otherwise the benefits of years of hard work will be lost

Moons et al European Heart Journal (2006) 27, 1324–1330