Andersons pediatric cardiology 2140
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malformedhearts,whousuallyrequirelife-longmedicalcare,hasbeen
recognized.Severalpanelsofinternationalexpertshaveprovidedframeworks
forprovisionofservices.3–6Theseshareanumberofcommon
recommendations.First,allrecognizetheneedformanagementinanadult
environment,astheaverageageofthepopulationofadultswithcongenital
cardiacdiseaseincreases.Second,allrecommendahierarchicalstructurefor
care,withspecialistcentersprovidingafullrangeofdiagnosticfacilitiesand
treatmentsinteracting,andoftensharingcare,withotheradultcardiacunits.
Third,allaccepttheneedfortrainingofanewsubspecialtyofmedicalandallied
healthpractitionerswithexpertiseinthemanagementofcongenitalcardiac
diseaseandthecareofadults.Throughoutchildhood,patientswithcongenital
cardiacdiseasearetreatedandfollowedupatpediatriccardiologycenters.When
theybecomeadults,itisadvocatedthattheirmedicalsurveillanceandfollow-up
careistransferredtoadult-focusedfacilities.3–6Thischapterdefinestransferand
transition,describesthekeyissuesintransition,andexplainsthecore
componentsofeffectivetransitionprograms.
TransferFromPediatrictoAdultCare
Transferisdefinedas“Aneventorseriesofeventsthroughwhichadolescents
andyoungadultswithchronicphysicalandmedicalconditionsmovetheircare
frompediatrictoanadultcareenvironment.”7Aseamlesstransferbetween
pediatricandadultsettingswarrantthatage-anddevelopmental-appropriatecare
isprovided,whileassuringthatpatientsremainunderfollow-up.8Research,
however,hasindicatedthatasubstantialnumberofpatientsdohavegapsintheir
care.Inpatientswithcongenitalcardiacdisease,caregapratesrangefrom7%to
76%,9withamedianproportionof42%.Theconsequencesofsuchcaregaps
maybefar-reaching.Studieshavereportedthatpatientswhopresentedfor
medicalcheck-upafteracaregapmoreoftenhadanewdiagnosisof
hemodynamicsignificanceandhadagreaterlikelihoodofneedinganurgent
surgicalcatheter-basedintervention.10–12Thereforetheidentificationofpatients
atriskforcaregapsandtheimplementationofinterventionsthatpreventsuch
caregapsareofutmostimportance.9Inthisrespect,useofmobilephone
messagingreminderstoreducemissedappointmentsinoutpatientclinics13and
theimplementationoftransitionprogramstomakepatientsandfamiliesaware
abouttheneedforlife-longcare8mayfacilitatethetransferfrompediatricsto
adultcareandmayavoidcaregaps.
Transition
Transitioncanbeseenbothasadevelopmentalprocessandasahealthcare
intervention.Asadevelopmentalprocess,transitionsarepassagesfromonelife
phase,physicalcondition,orsocialroletoanother,resultinginatemporary
disconnectednessofthenormalwayofliving,whichdemandsanadjustmentof
thepatientandtheenvironment.14,15Asahealthcareintervention,transitionis
definedas“amultifaceted,activeprocessthatattendstothemedical,
psychosocial,andeducational/vocationalneedsofadolescentsastheymove
fromthechild-focusedtotheadult-focusedhealthcaresystem.”16Insuchan
intervention,theadolescentsarepreparedtotakechargeoftheirlivesandtheir
healthinadulthood.7Transitiontakestime,andisnotnecessarilycompletedon
entrytoadultcare.Itsdurationvariesconsiderablyfrompatienttopatient,andis
influencedbyanumberoffactors,includingthebackground,development,and
intellectofthepatientandthelevelofsupportprovidedbythefamily.Thewhole
processtakesseveralyears,andisonlysuccessfullyachievedwhenthepatientis
fullyabletotakeresponsibilityfortheirownhealthandissuesoflifestyle.Itis
importantthereforethatduringtheprocess,youngadultswithcomplex
congenitalcardiacmalformationsappreciatethatalthoughtheyhavethe
potentialtolivehealthyandproductivelives,mostwillrequirelife-longcardiac
surveillance.Theyalsoneedtounderstandtherequirementtoobtain
appropriatelyskilledcare.Duringtransition,issuesbothgenericanddiseasebasedneedtobeaddressed.Frequently,thecoordinatedtransferofcarefromthe
pediatrictotheadulthealthcareenvironmentisthefinalstepinasuccessful
processoftransition.
Pediatricianstendtoconsultpredominantlywiththeparents,whereasadult
practitionersseektodevelopapartnershipwiththepatient.Thisinvolves
directinginformationandeducationtowardthepatientand,atthesametime,
encouragingresponsibilityandself-reliance.Itiscriticalthatduring
adolescence,thisconnectionwiththeyoungpatientissuccessfullyachievedso
thatthepatientsbegintounderstandtheneedforanactiveroleintheirown
healthandcardiacmanagement.Ifthisfails,adolescentsandyoungadultsmay
disappearfrommedicalfollow-upandreturnonlywhenpotentiallyavoidable
problemshavedeveloped.
