Commentary by the Paediatric Cardiac Society of South Africa (PCSSA) on the European Society of Cardiology Guidelines for the “Management of Grown Up Congenital Heart Disease. The Task Force on the Management of Grown Up Congenital Heart Disease of the European Society of Cardiology

Brown, Steven

Cilliers, Antoinette

Hugo-Hamman, Chris

Levin, Solly

English

Stellenbosch University: SUNJournals

52* Paediatric Cardiologist. Division of Paediatric Cardiology, C.H. Baragwanath Hospital, University of the Witwatersrand, Johannesburg# Paediatric Cardiologist, Constantiaberg Mediclinic and Lecturer, University of Stellenbosch, Cape Town† Principal Specialist and Associate Professor, Department of Paediatric Cardiology, University of the Free State, Bloemfontein§ Emeritus Professor of Paediatric Cardiology, University of the Witwatersrand, JohannesburgAddress for correspondence:AM CilliersDivision of Paediatric CardiologyC.H. Baragwanath HospitalP O BertshamJohannesburg2013    Email:amcilliers@icon.co.zaAuthors: Antoinette Cilliers*, Chris Hugo-Hamman#, Steven Brown†, Solly Levin§Guidelines for the Management of Grown Up Congenital Heart Disease (GUCH)specialized diagnostic imaging of lesionsarrhythmias and pacemakersproblems associated with cyanosis and pulmonary vascular diseaseinterventional catheterizationpregnancy and genetic counselingcomorbidity with coronary artery disease and syndromessurgical issues including transplantationpsychosocial issues and intellectual developmentemployment and life insuranceIncluded in the guidelines is a summary of current management strategies of the commonest lesions seen in grown-ups with congenital heart disease. Many of the recommendations are based on clinical experiences rather than evidence based clinical trials. The lesions covered in this section include atrial septal defects, ventricular septal defects (repaired and un-repaired), atrial septal defects (post-repair), pulmonary stenosis, Tetralogy of Fallot (postoperative), conduits, aortic valve stenosis, sub-aortic stenosis, coarctation of the aorta, patent ductus arteriosus, Ebstein’s anomaly, Fontan operations, Marfan’s syndrome, postoperative transposition, and congenitally corrected transposition.Unfortunately there is no explanation regarding the categories of insurance that they refer to. RECOMMENDATIONS                                                       The last section of the report deals with specifi c recommendations, summarized as follows:1.  There should be a transitional service for 12 to 16-year-olds before transfer to adult care.2. There should be a referral path into a GUCH service.■■■■■■■■■GUIDELINESCommentary by the Paediatric Cardiac Society of South Africa (PCSSA) on the European Society of Cardiology Guidelines for the “Management of Grown Up Congenital Heart Disease. The Task Force on the Management of Grown Up Congenital Heart Disease of the European Society of Cardiology.”European Heart Journal, 2003:24;1035-1084. http://eurheartj.oxfordjournals.org/cgi/content/extract/24/11/1035GUCHThe following commentary refl ects the opinion of the PCSSA.More and more patients with congenital heart disease are surviving to adulthood and this is largely due to the efforts and successes of paediatric cardiology and surgery over the last four decades. It is a fact, however, that adult cardiologists worldwide are not trained to best manage these patients.NEEDS AND REQUIREMENTS                                          The task force on the management of GUCH disease of the European Society of Cardiology prepared a document, which details the specifi c needs and problems of these patients, which include the following;the need for transition from paediatric to adult care clinicstraining of practitioners in GUCH■■13059 SAHJ journal October.indd   52 11/8/07   9:37:17 AMVol. 4, No. 4, 20073.   There should be regional specialist GUCH units within adult cardiology programs in multidisciplinary teaching environments. These units should have the resources to investigate and treat patients with complex congenital heart disease.4.   Training programs for specialist staff and cardiologists with “an interest” should be defi ned and implemented.5.   The provision of health care delivery for GUCH patients and the training should be standardized and coordinated through the ESC.COMMENT                                                                             1.   This guideline is prepared for an entirely different community with physical, fi nancial and human resources massively different from that which we have in South Africa.  2.   The public health sector in South Africa has under-resourced tertiary care services with major infrastructural and staff shortages. Although there is a great need for GUCH services and training, these will have to compete with other greater and more pressing health issues, such as the HIV epidemic that has overwhelmed our existing meagre health structure.3.   There is an urgent need for leadership from government and professional organizations to work towards a coordinated system aimed at optimizing patient care for GUCH. 4.   The South African Heart Association (SA Heart), PCSSA and allied professionals bodies ought to develop GUCH services with partnerships between the Paediatric Cardiology and Adult Cardiology fraternity in forming management strategies for this unique and expanding group of patients.  5.   It is in the best interests of the patient with GUCH that a cardiologist trained in congenital heart disease supervises their care. This should be incorporated in any guideline on the management of GUCH.  5313059 SAHJ journal October.indd   53 11/8/07   9:37:18 AM

Guidelines for the Management of Grown Up Congenital Heart Disease (GUCH)

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Guidelines for the Management of Grown Up Congenital Heart Disease (GUCH)

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