Andersons pediatric cardiology 2143
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fellowship.39Transitionprogramsoughttointegratemeetingwithpeersinthe
carepackagethattheyprovide.27Thiscouldbedoneaspartofanadolescent
day27,39oracamp.40,41
ActualTransfertotheAdultCongenitalCardiac
Clinic
Theactualtransferfrompediatriccardiologytotheadultcongenitalcardiac
clinicisamilestoneinthetransition.Thistransferusuallytakesplacearoundthe
ageof18years.Aproperhandoverhastobescheduled.Therearedifferentways
toorganizethishandover.Itcanbedonebymeansofareferralletterincludinga
summaryofthemedicalhistory.19However,apersonalcontactbetweenthe
pediatricandtheadultproviderswouldbemoreoptimal.Inthisrespect,ajoint
outpatientvisitwiththepediatriccardiologistandtheadultcongenital
cardiologistissometimesadvocated.Giventhetimeconsumptionandpractical
difficultiestoorganizeit,suchjointoutpatientvisitsareseldomsustainable.
Therefore,transitioncoordinatorsaredeemedtoplayacrucialrole.Forinstance,
atthefirstvisitattheadultcongenitalcardiacoutpatientclinic,thepatientmeets
thetransitioncoordinator,whoisthenjoinedbytheadultcongenital
cardiologist.Inadditiontohandingoverthemedicalfile,thetransition
coordinatorexplainstheissuesthathavebeendiscussedandworkedonduring
thetransition.Inputfromthepatientandparentsarefacilitated.Thiskindof
transfervisithasbeenfoundtolowerthebarriertowardtheadultprogram,and
hasbeenshowntobeeffective.39
TrainingofPractitionerstoProvide
ServicesforTransition
Thereisaclearneedtodevelopanewgroupofspecialiststodealwiththelongtermneedsofpatientswithcongenitallymalformedhearts.Thisshouldinclude
medicalpractitioners,specialistnurses,andalliedhealthprofessionals.Recent
recommendationsemphasizetheneedfortraininginadultandpediatric
cardiology,aswellasfamiliaritywithgeneralmedicalissues.Aparticularly
importantroleisthatofthetransitioncoordinator.Whereastransition
coordinatorsarecurrentlytrainedaspartofaninterventionstudy,27formaland
structuredtrainingprogramsforfuturetransitioncoordinatorswillbe
indispensabletosafeguardahigh-qualitytransition.Suchtrainingprograms
shouldaddressadolescents’healthanddevelopment,communicatingwithand
interviewingyoungpersons,detectionofandscreeningforriskbehaviors,and
patienteducation.
Theprovisionofserviceswithappropriatelytrainedstaffisdevelopingrapidly
insomecountriesbutlaggingbehindinothers.42Suchresourceswillaffectthe
designandcompositionoftheservices.Anynecessarycompromises,however,
shouldnotdistractfromtheneedtodevelopprogramsofhighquality,which
coverseamlesslytheentirelifecourseofthepatientwithacongenitally
malformedheart.
Summary
Transitionofcarefrompediatrictoadultservicesisacrucialperiodforpatients
withcongenitalcardiacdisease.Ifmanagedbadly,patientsfailtounderstand
theirdisease,itsimpactontheirlife,andtheneedforlong-termfollow-up.Asa
result,theyfrequentlydefaultfromcare,andtheiroutcomeisadverselyaffected.
Ifmanagedwell,patientscanbeempoweredtograduatefromthepediatric
environmenttotakecontroloftheirownhealth.Thisensuresnotonlycontinuity
ofhigh-levelcardiactreatment,butsuccessfulintegrationintonormaladultlife.
Allsystemsforhealthcarethatembarkonthetreatmentofchildrenwith
congenitalcardiacdiseasemust,therefore,undertaketoprovideaneffective
servicefortransitiontoappropriateadultcare.
