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PatternsofReferralandDemographics
ofHeartTransplantationDuring
Childhood
Thefactorsaffectingreferralandthelistingofpatientsforcardiac
transplantationarecomplexbutincludetheavailabilityandoutcomesof
alternativesurgicalstrategies,availabilityofspecificexpertise,thepatternsof
referraltoanindividualcenter,aswellassocietalandindividualbeliefs.
Analysisofthenaturalhistoryandoutcomesmusttakeallthesefactorsinto
account.Besidesreportsfromsinglecenters,therearetwomainsourcesofdata
onoutcomesforchildrenfollowinglistingfortransplantationandafter
transplantation.TheregistryoftheInternationalSocietyofHeartandLung
Transplantation(ISHLT)2isaninternationalregistrytowhichpatiententryis
voluntaryexceptintheUnitedStatesofAmerica,wherefederalmandate
requiresalldatafromtheUnitedNetworkofOrganSharingtobesharedwith
thesociety'sdatabase.ThesecondsourceisthePediatricHeartTransplantStudy
(PHTS),avoluntary,research-basedandevent-drivenmulticenterregistry.Itwas
establishedin1993inordertocapturedatarelativetooutcomes.3,4Thissource
currentlyincludes7716patientslistedfortransplantation,ofwhom5586
underwenttransplantationbetweenJanuary1,1993,andDecember31,2016.
Thedataaresuppliedby53centers(48UnitedStatesand5international).
Accordingtothe19thannualreport2oftheISHLT(2016),thenumberof
transplantationsinchildrenperformedeachyearhasincreasedovertheprior
decade,with586performedin2014comparedwith442in2004(Fig.67.1).
Recipientagedistributionhasremainedstablesincethemid-1990s(Fig.67.2).
Geographicdifferencesexistworldwide.Forexample,teenagersaccountforhalf
oftherecipientsinEuropeandotherareasoftheworld,whereasinNorth
Americamoreinfantsundergotransplantation(Fig.67.3).
FIG.67.1 Totalnumberofrecipientsofhearttransplantationduring
childhoodbyyearoftransplantandage.ISHLT,InternationalSocietyof