Andersons pediatric cardiology 1764
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includingaheartfailure/transplantcardiologistexperiencedincaringforthe
heartfailurepatient,cardiothoracicsurgeon,perfusionist,VADspecialist(i.e.,
registerednurseornursepractitionercoordinator),socialworker,casemanager,
physicalandoccupationaltherapists,mentalhealthexperts,registereddietician,
andpalliativecareexperts.Identificationofaspecialistwillingtobeaconsistent
pointofcontactforVADpatientswithinthemedicaldisciplinesofhematology,
infectiousdisease,andneurologymayalsobeofbenefittoongoingmanagement
ofVADpatients,giventheriskofdevice-relatedcomplicationsandsupportof
ongoinganticoagulationmanagement.Patientsmayalsobenefitfrom
standardizedpracticesthatcanbedevelopedincollaborationwithother
disciplines(e.g.,astandardizedapproachtosuspecteddrivelinesiteinfectionor
suspectedstroke).114Additionalservicesthatmaybeusefulinthemanagement
ofthepediatricVADpatientbutnotroutinelyavailableatallcentersinclude
cardiacrehabilitation(exerciselab),childlife,andartandmusictherapy
services.
Althoughthereiscurrentlyapaucityofliteraturetosupportoutpatient
managementofthepediatricVADpatient,thereisagrowingbodyofevidence
showingthefeasibilityofsuchendeavors,aswellasthebreadthofteams
necessarytosupportthishighacuitylowvolumepopulationoutsideofthe
hospitalsetting.42,114–119Currently,thereisnoregulatoryoversightofpediatric
VADprograms.TherearerecommendationssetforthbytheInternational
SocietyforHeartandLungTransplantregardingVADs,whichinclude
recommendationsonVADmanagementbothinhospitalandonanoutpatient
basis,althoughthisdocumentisgenerallygearedforadultpatients.14Asthe
fieldevolves,developmentofevidence-basedguidelinestohelpguidethe
managementofthesecomplexoutpatientswillbeneeded.
DespitetheincreasinguseofdurableMCSinpediatrics,itremainsalowvolumetherapythatmayposechallengestosecuringinstitutionalresources,
suchasadedicatedVADcoordinator.Intheabsenceofdedicatedfunding,
centersmaychoosetoidentifyoneormorekeypersonswithintheheartfailure
and/ortransplantservices(registerednurse,advancedpracticenurse,
perfusionist)toserveasaconsistentpointofcontactforVADpatients.AVAD
coordinatorplaysacrucialroleinsuccessfuloutpatientmanagementofthe
pediatricVADpatient;thescopeofaVADcoordinatormayvaryatdifferent
institutions.Thecoordinatormayberesponsibleforbeingaliaisonbetweenthe
physicianandfamilyorbeaclinicianactivelymanagingvaryingaspectsofcare
includingVADsettings,heartfailuretherapies,andtheanticoagulationregimen.
Inaddition,manycoordinatesareresponsiblefortheinitialandongoing
educationtohospitalstaffandcaregivers(home,school,daycare),providing24houraccessfordevicetroubleshootingandsymptommanagement,supporting
deviceimplantinoperatingroom,andactingasaconnectionbetweendevice
representatives.115,119
Educationforthepatientandcaregiverideallybeginspriortoimplantand
continuessolongasthedeviceremainsinsitu.BecausepediatricVADpatients
requireadultsupervision,identificationofmorethanonecaregivercanbe
considered.Astandardizedapproachtoteachinganddischargeofthepediatric
VADpatientandcaregiversissuggestedandmaybecomposedofthefollowing:
1.Age-appropriatepatienteducation
2.Caregivereducation
a.Standardizeddevicespecificeducationplanwithteachback
ensuringabasicunderstandingofhowthedevicefunctions,
devicecareandcontrollerfunctionality,andtheabilityto
appropriatelyrespondtoalarms
b.Drivelineexitsitecare(perinstitutionalpolicy)with
demonstrationandsignsandsymptomsofinfection
c.Dailymonitoringofdevice,vitalsigns,weight,and
medicationrecordkeepingasperinstitutionalpolicy
d.Anticoagulationeducationasperinstitutionalpolicy(type,
administrationguidelines,activityrecommendationsfor
patientsonanticoagulation)
e.Cardiopulmonaryresuscitation/automatedexternal
defibrillatortrainingasperinstitutionalpolicy
f.Expectationsforroutinefollow-up,whenandwhomtocall
3.Homeassessment(i.e.,appropriatenessoffacilitiesbasedonindividual
patientneeds,groundedoutlets,assessingforstaticdischarge)
4.Identificationoflocalresources(i.e.,hospital,emergencymedical
services/firestation,primarycarephysician,outpatientlab,localgas,
and/orelectriccompanies).Preformattedlettersmaybeprovidedtothe
primarycarephysicianandlocalagenciestonotifythemofthepresence
ofaVADthatintheirareaorreturningtotheirpractice.Identificationof
localhospitalsmaybehelpfulasnotallinstitutions(emergency
departments)routinelyseeVADpatients,particularlypediatricVAD
patients
5.Disasterpreparedness.CreationofanemergencyplanforVADpatients
thatcanbeimplementedintheeventthereisanaturaldisasteror
anticipatedpowerloss(e.g.,icestorm,hurricane)
Oncethepatient(whereapplicable)andcaregiversareassessedascompetent
inthecareoftheVADsupportedchild,anoff-unittripwithanoff-sitetripcan
bepursuedtoensuretheyremainbothcompetentandcomfortablecaringfor
theirchildawayfromnursingsupports.Aninstitutionmayconsidermandating
dischargetoalocalresidencebasedoncaregivercompetence,patientstability,or
distanceofresidenceformdischargingfacility.Dressingsuppliesandany
prescribedmedicalequipmentshouldbesecuredpriortodischarge.Inaddition,
ifthepatientistoreceivehomenursingsupports,devicetrainingforhome
nursingstaffshouldbecompletedpriortopatientreceiptofsuch
services/devices.
Asystemforpatientsandcaregiverstocontacttheircareteamissuggestedfor
thepurposeoftroubleshootingthedeviceandearlyrecognitionof
complications.Thismaybecompletedthroughanexistingcalltreesystemorby
providing24-hourphoneaccess.Coveragemaybeprovidedbythephysician
provider,theVADcoordinator,orperfusion,asdictatedinstitutionallyand
shouldbeprovidedtothepatientandcaregiverupondischarge.Plansforfollowupmayvaryfromoneinstitutiontoanotherbutaregenerallyasfrequentasone
totwotimesweeklywithagradualtapertooncemonthlyoronceevery3
months.Patientsrequirefrequentlabmonitoringanddevicedownloadsand
homerecordreviewwithvisits.Imagingmaybecomelessfrequentasthepatient
continuestodemonstratestability;however,theusefulnessofmorefrequent
echocardiographicimagingshouldbeatthediscretionofthecareteamand
shouldalwaysbecompletedwhenthereareclinicalconcerns.Deviceand
drivelineexitsiteassessmentshouldoccurwitheachvisit.Giventheocclusive
natureofsomedressings,itmaybereasonabletocompleteadressingchange
duringaroutineclinicvisit.Caregiversmaybeabletoobtainphotographsto
sharewiththecareteam,providedthisdoesnotcompromisetheirabilityto
completedressingchangesperprotocol.115,120
Anticoagulationmonitoringcanbeprovidedbythemanagingcardiacteamor
byaconsultingspecialtyservicesuchashematology.Therearecurrentlyno
pediatricVADspecificanticoagulationguidelinesforintracorporealCFdevices.
Manufacturerrecommendations,aswellasdataextrapolatedfromtheadult
experience,areusefulresources,aswellashematologyservices,indevisingthe
