[Ethical, psycho-social, legislative and economic aspects of surgical treatment of the hypoplastic left heart syndrome].
Hypoplastic left heart syndrome (HLHS) represents a lethal congenital heart disease, which used to be considered inoperable. The improvement of results of cardiac surgery in neonates improved also the prognosis of patients with this heart lesion. HLHS, however, continues to be an unresolved problem from ethical, psychological, social and economical points of view. Opinions regarding the care for these patients depend on economical, political, cultural and religious factors. Based on recent experience it is evident, that HLHS is an operable disease in a child, who without surgery would otherwise die. Approximately 40% of patients with HLHS can live 15 years after surgery. The long-term prognosis remains, however, unclear. Because of the need of demanding care for a patient with HLHS, it is necessary to see also the quality of life and hear the opinion of parents. Psychomotor development and the quality of life may be altered by complications. An individualized approach in fetuses and neonates with HLHS on the basis of prenatal diagnosis, analysis of risk factors, provision of detailed informations to parents and indications for surgery in neonates having chance for an acceptable result is considered to be the most acceptable solution. In the future it will be necessary to concentrate the research on prenatal diagnostics, treatment and postoperative follow-up including psychomotor development and quality of life. In the preparation of legislative, which would reflect more sensitively the contemporary possibilities of medicine and at the same time regard the problems of health care organization, as well as social and economic aspects, narrow interdisciplinary cooperation will be required.
Tláskal
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Dĕtské kardiocentrum FNM, Praha. tomas.tlaskal@lfmotol.cuni.cz
D006348:Cardiac Surgical Procedures / Q000191:economics; D000075202:Contraindications; D017281:Cost of Illness; D004989:Ethics; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000191:economics / Q000601:surgery*; D007231:Infant, Newborn; D011379:Prognosis; D011788:Quality of Life