Grown up Congenital Heart Disease and the Paediatric Cardiologist

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

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

3. Questions • 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?

4. 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

5. The load • No idea • Data from Wren (Heart 2001) – 200 patients per 100 000 live births enter ACHD group every year – estimate for SA 1600 • 1300 ops per annum SA – 1/3 will need follow up – 400 patients • Patients > 16 – low mortality rate – pool grows

7. 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

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

9. 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

10. Separate ACDH centres in SA? • Population – sufficient • European Review – 500 patients seen per annum – opd; 42 ops; 50 admissions • Total numbers seen at GSH - 6000 • Private practices vary – from IHD factories to non-invasive to EP • Private – liaison with Adult cardiologist/EP possible

12. Median 500 patients (100-2600) • 50 admissions (5-450) • 42 surgeries

13. 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

14. 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

15. ‘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.’

16. 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

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