Andersons pediatric cardiology 1898
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“InterstageII”—BeyondtheSuperior
CavopulmonaryConnection
InmuchofNorthAmerica,conceptsandpracticesspecifictointerstage
managementbegunbyGhanayemandcolleaguesattheChildren'sHospitalof
WisconsinhavebeenwidelyadoptedbytheNPC-QIC,alearningcollaborative
withcontributionsfrommorethan60pediatriccenters.Improvements
accomplishedtodatehaveincludedasignificantreductionininterstage
mortalityforinfantsawaitingstageIIpalliation.Aggregateinterstagemortality
decreasedfrom9.5%to5.1%,arelativereductionof46%.Inaddition,therewas
asignificantreductioninthenumberofinfantsexperiencinginterstagegrowth
failure,withareductionfrom18.6%to13.3%,arelativereductionof28.4%.44
FamilyresponsetotheirchildreachingstageIIpalliationmayvaryfrom
excitementduetotheirchildsurvivingthehigh-riskinterstageperiodtoanxiety
relatedtoanothercardiacsurgery.AsrecoveryfromstageIIpalliation
progressesanddischargeplanningbegins,familiesfaceseveralcaredelivery
issues.First,oversightbythefamiliarandeasilyaccessibleprotectiveinterstage
careteam53ceases,andcomprehensivecareisnowtransferredtothe
primary/referringcardiologist.Alterationsinchronicmanagementareinevitable
duetochangesincirculatorystatusbutmayresultinconfusionandmistrustof
thenewcareteam.Dailyassessmentsofweightsandoxygensaturationisno
longernecessary;thustheconstant“reassurance”previouslyprovidedthrough
dailydatatrendinghasended.Thisisespeciallyimportantforthoseinfantswith
noncardiaccomorbiditiesandfeedingchallenges.Despitetheaforementioned
challenges,thecessationofhomemonitoringillicitsvariousparentresponses,
rangingfromtherealizationofhowstressfulthepastmonthshavebeen,torelief
thattheirchildisinabetterstate,toacknowledgingthegreatamountofenergy
neededtoadjusttotheirnewnormal.
Itiscurrentlybecomingapparentthatthegainsrealizedbyprotocol-driven
monitoring,care,andsurveillancecanandshouldcontinueduring“interstage
II”—theperiodinbetweenthesuperiorcavopulmonaryconnectionandtotal
cavopulmonaryconnection(Fontan).Althoughtheriskofsuddencirculatory
collapseisreducedafterstageIIpalliation,livingwithafunctionally
univentricularheartconfersongoingriskduringthesecondinterstageperiod
betweenthesuperiorcavopulmonaryconnectionandcompletionFontan,witha
singlecenterreportnoting12%mortalityduringthesecondinterstageperiod.54
TheNPC-QIClaunchedphaseIIforinterstagecarein2016withthegoalof
expandingthescopeforongoingqualityimprovementandresearchforinfants
withhypoplasticleftheartsyndromefromthetimeofdiagnosistothefirst
birthday.TheaimofphaseIIistoimproveoutcomeswiththefocusedareasof
fetalandperinatalcare,surgicalandcriticalcare,interstagecare,
neurodevelopment,nutritionandgrowth,transparency,andpatientandfamily
support.Designatedworkinggroupsineachoftheseareaswillcontinueto
informandcollaborativelyimproveoutcomesandqualityofcareforchildren
withafunctionallyuniventricularheartduringeachinterstageperiod.Atthe
timeofthiswriting,thereisconsiderablevariationintheinvestigationsdone
duringinterstageII(e.g.,echocardiography,cardiaccatheterization,magnetic
resonanceimaging,laboratorywork),aswellasthetimingoftheeventual
Fontanoperation.Patientswithafunctionallyuniventricularheartarelikelyto
benefitfromthemethodslearnedduringinterstageI,includinglessvariabilityin
managementandconsistentsurveillancepractices.Currenteffortswillredefine
“interstagemonitoring”toincludecomprehensivecareacrossthecare
continuumand,importantly,enrichthelivesofchildrenwithafunctionally
univentricularheartandtheirfamilies.
References
1.GhanayemNS,CavaJR,JaquissRD,Tweddell
JS.Homemonitoringofinfantsafterstageone
palliationforhypoplasticleftheartsyndrome.
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2.SimsicJM,BradleySM,StroudMR,AtzAM.
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3.RuddNA,FrommeltMA,TweddellJS,etal.
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2014;148(4):1540–1547.
4.SiehrSL,NorrisJK,BushnellJA,etal.Home
monitoringprogramreducesinterstagemortality
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5.HansenJH,FurckAK,PetkoC,etal.Useof
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