Problemi non correnti
L’adolescente e il giovane adulto con cardiopatia congenita
THE ADOLESCENT AND THE YOUNG ADULT WITH CONGENITAL HEART DISEASE
ALESSANDRA BENETTONI1, JANE SOMERVILLE2
1Servizio di Cardiologia, IRCCS “Burlo Garofolo”, Trieste
2Imperial College School of Medicine, Grown-up Congenital Heart Unit, Middlesex Hospital/UCL, Londra
Aprile 2003 - pagg. 243 -249
Abstract
The article addresses the needs and problems of grown-up congenital heart (GUCH) patients.
The size of GUCH population is uncertain, but since 80-85% of patients born with congenital
heart disease (CHD) now survive to adulthood (age 16 years), an annual increase can
be anticipated, according to birth rate. Not all GUCH patients require the same level of expertise:
20-25% are complex, or rare and require life-long expert supervision and trained
staff; a further 35-40% require access to expert consultation. The remaining 40% have simple
or cured diseases and need little or no specialist expertise. Prenatal diagnosis and option
for termination of pregnancy in the future could have an impact on the number of serious CHD
disease patients. Some specific problems in the GUCH population are: ventricular dysfunction,
arrhythmias, contraception and pregnancy, infective endocarditis, non cardiac surgery,
intervention by catheter or cardiac surgery. Autopsy is also most important. Transition
of care from paediatric to adult supervision should be flexibly managed and explained to the
patient and the family. Level of care required should be explained to the family: it may be none,
occasional, or fully specialist supervision. Easy access to specialised care and support with
lifestyle and social problems should be assured. All patients should be entered into a local data
base and a national registry allowing the dissemination of informations on special needs.
Parole chiave
Suggerite dall'AI
Classificazione MeSH
Bibliografia
1. Report of the British Cardiac Society
Working Party. Grown-up congenital heart
(GUCH) disease: current needs and provision
of service for adolescents and adults with congenital
heart disease in the UK. Chairman Jane
Somerville. Heart 2002;88 suppl:i1-i14.
2. Proceedings of the 32nd Bethesda Conference Care of the adult with congenital heart disease. J Am Coll Cardiol 2001;37:1161-98.
3. Bosi G, Scorrano M, Tosato G, et al. The Italian Multicentric Study on epidemiology of congenital heart disease: first step of the analysis. Cardiol Young 1999;9:291-9.
4. Rustico MA, Benettoni A, d’Ottavio G, et al. Fetal heart screening in low risk pregnancies. Ultrasound Obstet Gynaecol 1995;6:313-9.
5. Cullen S, Sharland GK, Allan LD, Sullivan ID. Potential impact of population screening for prenatal diagnosis of congenital heart disease. Arch Dis Child 1992;67:775-8.
6. Bull C. Current and potential impact of fetal diagnosis on prevalence and spectrum of serious congeniatl heart disease at term in the UK. Lancet 1999;354:1242-7.
7. O’Sullivan JJ, Wren C. Survival with congenital heart disease and need for follow-up into adult life. Heart 2000;83suppl I:25.
8. Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child 1999;81:271-5.
9. Leonard H, O’Sullivan JJ, Hunter S. Family planning requirements in the adult congenital heart disease clinic. Heart 1996;76:70-2.
10. Siu S, Chitavat C, Webb GD. Pregnancy in women with congenital heart defects: what are the risks? Heart 1999;81:225-6.
11. Sadler L, McCowan L, White H, et al. Pregnancy outcomes and cardiac complications in women with mechanical, bioprosthetic and homograft valves. Br J Obstet Gynaecol 2000; 107:245-53.
12. Ammash NM, Connolly HM, Abel MD, et al. Noncardiac surgery in Eisenmenger syndrome. J Am Coll Cardiol 1999;33:227-9.
2. Proceedings of the 32nd Bethesda Conference Care of the adult with congenital heart disease. J Am Coll Cardiol 2001;37:1161-98.
3. Bosi G, Scorrano M, Tosato G, et al. The Italian Multicentric Study on epidemiology of congenital heart disease: first step of the analysis. Cardiol Young 1999;9:291-9.
4. Rustico MA, Benettoni A, d’Ottavio G, et al. Fetal heart screening in low risk pregnancies. Ultrasound Obstet Gynaecol 1995;6:313-9.
5. Cullen S, Sharland GK, Allan LD, Sullivan ID. Potential impact of population screening for prenatal diagnosis of congenital heart disease. Arch Dis Child 1992;67:775-8.
6. Bull C. Current and potential impact of fetal diagnosis on prevalence and spectrum of serious congeniatl heart disease at term in the UK. Lancet 1999;354:1242-7.
7. O’Sullivan JJ, Wren C. Survival with congenital heart disease and need for follow-up into adult life. Heart 2000;83suppl I:25.
8. Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child 1999;81:271-5.
9. Leonard H, O’Sullivan JJ, Hunter S. Family planning requirements in the adult congenital heart disease clinic. Heart 1996;76:70-2.
10. Siu S, Chitavat C, Webb GD. Pregnancy in women with congenital heart defects: what are the risks? Heart 1999;81:225-6.
11. Sadler L, McCowan L, White H, et al. Pregnancy outcomes and cardiac complications in women with mechanical, bioprosthetic and homograft valves. Br J Obstet Gynaecol 2000; 107:245-53.
12. Ammash NM, Connolly HM, Abel MD, et al. Noncardiac surgery in Eisenmenger syndrome. J Am Coll Cardiol 1999;33:227-9.