Andersons pediatric cardiology 2142
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EducationandCounseling
Itiscrucialforthepatienttounderstandhisorhercardiacdefectandits
consequences.Thisisrarelythecasewhenthepatiententersthetransitionclinic.
Effectivecommunicationrequiresrepetition,especiallywhenpatientshave
learningdisabilities,complexcardiacconditions,orlowlevelsofeducation.In
peoplewithcongenitalcardiacdisease,theeffectivenessofprovidingpatient
educationhasbeendemonstrated.29–31Aspectsonwhichpatientsaretobe
educatedaretheheartdefect,priorandcurrenttreatmentsandinterventions,
infectiveendocarditisandhowtopreventit,contraception,pregnancy,theriskof
recurrence,theimportanceoflife-longfollow-up,andthesymptomsthatrequire
medicalcheck-upifexperienced.
Beingknowledgeabledoesnotnecessarilymeanthatthepatientispresenting
withthecorrespondingbehaviors.32Thereforeattentionoughttobegiventothe
acquisitionofself-managementskills.Importantself-managementbehaviorsfor
peoplewithmalformedheartpertaintosportsandotherphysicalactivities,
tobaccouse,alcoholconsumption,nutrition,andillicitdruguse.
Inaddition,psychosocialaspectsshouldbecoveredduringtransition.These
aspectstypicallyincludecareerandvocationalplanning,employment,marriage
andfamilyplanning,andinsurability.Indeed,patientswonderhowtheircardiac
diseasewillaffecttheirabilitytoobtainajob,healthorlifeinsurance,ora
mortgage.Provisionofsupportandcounselingonsuchissuesduringthe
transitiontoadulthoodisessential.Manychildrenandyoungpeoplewith
congenitallymalformedheartswillbeabletohaveanycareertheymaychoose.
Thefutureofsomepatients,however,willincludephysicalorotherlimitations.
Theymayneedtobeadvisedtopursueappropriateeducationandcareer
pathways.Forexample,apatientwiththeFontancirculationshouldknownotto
becomeabricklayeroracommercialtrucker.Thesepatients,andtheirparents,
shouldhaveachancetodiscusssuchissuesbeforethepatientreacheshighschoolage,andbeforeimportantdecisionsaremade,oractionstaken,suchas
choosingacurriculumordroppingoutofschool.Asthelong-termoutcomeof
manycomplexcardiacconditionsbecomesclearer,evidence-based
recommendationscanbemadeinregardtofuturecareers.Thesewillcarry
weightwithfutureemployers,andrepresentanopportunityfortheclinicstaffto
actasadvocatesfortheirpatients,whoareoftenotherwisedisadvantagedbythe
stigmaattachedtochroniccardiacdisease.
Manypatientswillhavedifficultyinobtainingbothhealthandlife
insurance.33Theymaybedeniedcoverage,orofferedaheavilyloadedpremium
basedonout-of-dateinformationrelatingtotheriskofdeath.Evenfavorable
clinicalfactors,suchasmilddefect,normalfunctionalstatus,andgoodleft
ventricularejectionfractiondonotprotectagainstconstraintsininsuranceand
mortgageapplications.33Supportgroups,suchastheGrownUpCongenital
HeartDiseaseAssociationintheUnitedKingdom(availableat:
),haveexcellentlinkswithinsurancecompanies.Inthe
UnitedStates,thedifficultiesencounteredbyyoungpatientswithchronic
conditionsinobtaininghealthinsurancearenowrecognized.Opportunitiesvary
betweenstates,anditishopedthatlegislationtoprovideamoreuniformlevelof
supportwillbeenactedinthenextfewyears.
Afrequentlyneglectedpsychosocialaspectisend-of-life.Itmaysound
prematuretotalkaboutend-of-lifeissueswithadolescents.However,
irrespectivetheageorthecomplexityofthecardiacanomaly,patientswith
congenitalcardiacdiseasehaveexpressedthestrongwishtotalkaboutend-oflifedecisionswiththeirhealthcareproviders.34
Beforeanyeducationalorcounselinginterventioncanbeimplemented,
individualpatientsshouldbecomprehensivelyassessedintermsoftheir
knowledge,self-management,andpsychosocialaspects.Inordertoundertakea
broadandgenericassessmentoftheadolescent'shealth,theHEADSmethodhas
beendeveloped.35HEADSstandsforHome;Education;Eating;Activities;
Drugsincludingtobacco,alcoholandillegaldrugs;Depressionandsuicide
ideation;Sexuality,includingcontraception;Safetyfrominjuryandviolence;
andSelf-harm.HEADSistobeadministeredduringaninterview,anditguides
thehealthcareprofessionalinsystematicallyaddressingalltheissuesthatare
importantintermsofadolescenthealth.
AvailabilitybyTelephone,Email,orOther
Technologies
Duringthetransitionfrombeingadependentchildtobecominganindependent
adult,theadolescenthastoaccomplishnumerousdevelopmentaltasks.Thismay
beassociatedwithsubstantialuncertaintiesandalotofquestions.Inbetweenthe
scheduledoutpatientvisits,ad-hocquestionsregardingthecondition,therapy,
transitionprocess,appropriatehealthbehaviors,orclinicappointmentsmay
emerge.Thecongenitalcardiacteamshouldbeavailableforquestionsfromthe
patientsandfamilies,toavoidgrowinguncertaintiesoradoptionofdetrimental
behavior.Thetransitioncoordinatorwillplayanessentialroleinthis,bybeing
availablebytelephone,email,orothercontemporarycommunication
technologies.
InformationAboutandContactWiththeAdult
CongenitalHeartDiseaseClinic
Whenpatientsaretransferredfrompediatricstoadultcare,theyareleavinga
familiarenvironmentandhealthcareteam.18Initself,thisisseenasnormal.18
However,adolescentsandtheirfamiliesexpresstheirwishtobeinformedabout
theprocessesinandorganizationoftheadultcongenitalcardiacdiseaseclinic,
andwanttomeetthecardiologists,nurses,andotherteammembers
beforehand.18,36Informationleafletsabouttheteam,groupsessionstomeetthe
healthcareprofessionals,orguidedtoursthroughtheoutpatientclinicareuseful
toolstoinformadolescentsandtheirparentsinthepretransferphase.
GuidanceofParents
Duringthetransition,thereisanobviousshiftinrolesbetweentheadolescent
andtheparents.Adolescentsexpectthathealthcareworkersdirectthe
informationtothem.Theywanttobeheard.18Atthesametime,theystillhave
thesameexpectationstowardtheirparents,inthattheparentskeepthemposted
ofalldevelopments.Theadolescentsconsidertheirparentsasthefirstpointof
contactandmostimportantsourceofinformation.18Thismeansthatparents
shouldnotbeexcludedfromthetransition.Eveniftransitionprogramshave
dedicatedtimealonewiththeadolescentsduringtransitionvisits,theystillneed
toscheduletimetogetherwiththeparentstoupdateandinformthem.20,21It
shouldnotbeunderestimatedthatparentsaregoingthroughtransitionaswell,
andthereforeneedguidance.37
MeetingWithPeers
Adolescentswithcongenitalcardiacdiseaseexplicitlyindicatethattheywantto
talkwithpeerswhoareinthesamesituation.38Contactwithpeerscanbe
confronting,butitalsocanbecharacterizedbyidentificationandfeelingsof
