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Andersons pediatric cardiology 1775

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Patterns of Referral and Demographics of Heart Transplantation During Childhood The factors affecting referral and the listing of patients for cardiac transplantation are complex but include the availability and outcomes of alternative surgical strategies, availability of specific expertise, the patterns of referral to an individual center, as well as societal and individual beliefs Analysis of the natural history and outcomes must take all these factors into account Besides reports from single centers, there are two main sources of data on outcomes for children following listing for transplantation and after transplantation The registry of the International Society of Heart and Lung Transplantation (ISHLT)2 is an international registry to which patient entry is voluntary except in the United States of America, where federal mandate requires all data from the United Network of Organ Sharing to be shared with the society's database The second source is the Pediatric Heart Transplant Study (PHTS), a voluntary, research-based and event-driven multicenter registry It was established in 1993 in order to capture data relative to outcomes.3,4 This source currently includes 7716 patients listed for transplantation, of whom 5586 underwent transplantation between January 1, 1993, and December 31, 2016 The data are supplied by 53 centers (48 United States and 5 international) According to the 19th annual report2 of the ISHLT (2016), the number of transplantations in children performed each year has increased over the prior decade, with 586 performed in 2014 compared with 442 in 2004 (Fig 67.1) Recipient age distribution has remained stable since the mid-1990s (Fig 67.2) Geographic differences exist worldwide For example, teenagers account for half of the recipients in Europe and other areas of the world, whereas in North America more infants undergo transplantation (Fig 67.3) FIG 67.1 Total number of recipients of heart transplantation during childhood by year of transplant and age ISHLT, International Society of Heart and Lung Transplantation (From the registry of the International Society of Heart and Lung Transplantation J Heart Lung Transplant 2016;35(10):1185–1195.) FIG 67.2 Age distribution of recipients of heart transplantation during childhood (From the registry of the International Society of Heart and Lung Transplantation J Heart Lung Transplant 2016;35(10):1185–1195.) FIG 67.3 Age distribution of recipients of heart transplantation during childhood by geographic location (From the registry of the International Society of Heart and Lung Transplantation J Heart Lung Transplant

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