Andersons pediatric cardiology 2051

presentinolderchildren.Evenaftertakingintoaccountdemographicfactors,
diseaseseverity,andintelligencequotient,metacognitionuniquelyandstrongly
predictedpoorerschoolperformance.Inexploratoryanalyses,single-ventricle
patientswereratedashavinglowerschoolcompetencyandschoolQOL,while
two-ventriclepatientswereratedashavingpoorerbehavioralregulation.199
Whilemultiplestudieshaveshownthatthereispsychosocialdysfunctionin
thepediatricHDpopulation,fewstudieshaveassessedforanassociation
betweenpsychosocialpredictorsintheindividualorfamilyenvironmentand
health-relatedQOL.179,182,200–203Arecentmulticenterstudycomprising815
patient-parentpairsintheUnitedStatesandtheUnitedKingdomcompletedby
Ernstetalexploredtherelationshipsbetweenimportantpsychosocialfactorsin
thechildwithCHDandtheirparentandpsychosocialQOLscore.204Wallander's
andVarni'sdisability-stresscopingmodelguidedfactorselection,which
includeddiseasefactors,educationalimpairment,psychosocialstress,andchild
psychologicandparent/familyfactors.Themodelscreatedforpatient(R2=
0.58)andparent-proxy(R2=0.60)PCQLIPsychosocialImpactsubscalescore
accountedforasubstantialamountofvarianceinQOLscore.ForpatientreportedQOL,diseasefactors,educationalimpairment,poorself-esteem,
anxiety,patientposttraumaticstress,andparentposttraumaticstresswere
associatedwithlowerQOL.Forparent-proxy-reportQOL,diseasefactors,
educationalimpairment,greaterparentalmedicalstress,poorerchildself-esteem,
morechildinternalizingproblems,andparentposttraumaticstresswere
associatedwithlowerQOL.Theresultshighlightthatbiopsychosocialfactors
accountforoverhalfthevarianceinthepsychosocialQOLscoreinCHD
survivors.Assessingandtreatingpsychologicissuesinthechildandtheparent
mayhaveasignificantpositiveimpactonQOL.
MussattoetalperformedacorollarystudyfromthePCQLIValidationStudy
dataassessingtheimportanceofself-perceptionstopsychosocialadjustmentin
adolescentswithheartdisease.205InthisstudytheinvestigatorsassessedselfperceptionwiththeSelfPerceptionProfileforAdolescents(SPPA)andHRQOL
withthePedsQLgenericmeasure.LowerHRQOLscorewasassociatedwitha
shortertimesincelasthospitalization,theneedforanymedication,alower
householdincome,alowerglobalself-worth,aself-perceptionofpoorerhealth,

andalargernegativeSPPADiscrepancyscore.Morethanhalfthesampleranked
theircompetencylowontwoormoredomainsthattheyconsideredtobe
importantasmeasuredbytheSPPA.AlargernegativeSPPAdiscrepancyscore
wassignificantlyassociatedwithpoorerglobalself-worth.Oftheparticipants,


67%hadanegativeSPPAdiscrepancyscoreforbehavioralconductand83%for
scholasticcompetence.Bothglobalself-worthandtheSPPAdiscrepancyscore
weresignificantdeterminantsofinternalizingproblems,externalizingproblems,
andHRQOL,suggestingthatlackofcongruencebetweenperceivedcompetence
andimportanceisariskfactorformaladjustment.


Longer-TermEffectsoftheInitial
IntensiveCareUnitStayandLivingWith
ChronicCardiacDiseaseonthePatient
andFamily
Longer-TermEffectsoftheInitialICUStayon
thePatient-ParentDyadandPosttraumatic
StressDisorderinParents
Multiplefactorsforadverseoutcomescoexistinneonateswhoexperiencealong
initialhospitalLOS;allofthesehavebeenshowntoincreaseparentalstress,
anxiety,andfeelingsofhelplessnessandinadequacy.206–208Thisis
superimposedontheearlytraumaticeventsofreceivingthediagnosisofcCHD,
theuncertaintyofsurvival,separationfromtheinfant,separationfromother
familymembers,possiblesetbacksincludingpostpartumdepression,lackof
sleep,witnessingcardiopulmonaryarrestandothermedicalprocedures,being
surroundedbymedicalparaphernalia,andvicarioustrauma(witnessingeventsin
otherpatients).Followingdischarge,homecareoftheneonatefollowingsurgery
forcCHDmaybeexceptionallycomplex,withfeedingissuescommon,multiple

medications,feelingsofinadequacy,disruptionofthefamilyroutine,andmany
otherissues.209–213Thisstressful,abnormalmaternal-childdyadisrelated,in
part,tolaterbehavioralchallenges(Fig.76.3).8Theseearlychallenges,bothto
theinfantandthefamily,almostcertainlyhavelong-termeffectsonparenting
styles,psychosocialhealth,andthedevelopmentofthe“fragilechild”(Fig.
76.4).8,214–216Indeed,maternalworryandmaternalmentalhealth(alongwitha
smallcomponentofchildvisual-perceptualskills)accountedfor27.9%ofthe
variabilityinchildbehavioradjustmentattheendofthefirstyearofschool—5
to10timesmoreexplanatorythananysurgicalorintraoperativefactordescribed
todate.217Intheirseminalwork,McCuskerandcolleagueshaveshown,ina
randomizedtrial,thatperioperativeeffortstoreducematernalworryutilizing
advancedpracticenursinghavesignificantbenefitstoboththemotherandthe
child.218Acutestressdisorderinparentsduringtheneonatalhospitalizationis
common,219andhasbeenshowntoberelatedtosymptomsofposttraumatic