Andersons pediatric cardiology 2255
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continues,CHDwillbecomealeadingcauseofinfantmortalityworldwide.
However,isitsufficienttojustestimatenumbersofchildrenwithheart
disease?Thenounburdenisdefinedasaloadoramisfortunecausinghardship
orgrief.Heartdiseaseinchildrencertainlycausesanxietyinmostparentsand
patients,hardshipforthechildwiththediseaseandfortheirfamilyandgrieffor
thosewhohavedemisedeitherthroughneglectorperhapsdespitetreatment.The
nounalsoconvenientlydenotesobligation,duty,andresponsibility.We
recognizethatsocietyhasadutytocareforthesickandanobligation,througha
combinationoffinancialarrangements,topayforthatcare.Thereforeburden
denotestheamountornumberofchildrenwithheartdiseasebutalsothecostof
care.Thosecosts,carriedbyprivatecontributionorfromthepublicpurse,differ
betweencountries.However,doesthecrudeaveragecostforthesurgicalrepair
ofasimpleandcommonproblem(e.g.,aventricularseptaldefect[VSD]),
whetherinalow-incomecountrylikeIndiaorhigh-incomecountrylikethe
UnitedStates,accuratelyreflectthetrueburden?
Intheless-developedregionsoftheworld,notablyAfricaandsouthernAsia,
thevastmajorityofthosebornwithCHDwillneverreceivecareforwhatin
better-resourcedcountriesaretreatableconditions.Ninetypercentofchildren
withheartdiseasearewithoutaccesstothecaretheyneedtolivehealthyand
productivelives.Congenitalheartdefectsarethemostcommonofallbirth
defects,occurringinapproximately1outof120births,andtherateofdiseaseis
relativelystableacrosscountriesanddemographics.However,theimpactofthe
diseaseisheaviestonthosecountrieswithbothhighnumberofannualbirthsand
greatestlevelsofpoverty.JulienHoffman,writingin2013onthe“globalburden
ofcongenitalheartdisease,”notedthat“Althoughtheincidenceofcongenital
heartdisease(CHD)issimilarworldwide,theburdenofsupportingthese
patientsfallsmoreheavilyoncountrieswithhighfertilityrates.Countrieswith
thehighestfertilityratestendtohavethelowestincomespercapita,thus
accentuatingthedisparity.”8AlthoughtheyallexperiencethesamerateofCHD,
theburdenthesecaseshaveontheirrespectivehealthsystemvariesbythe
annualnumberofbirthsinthecountryanditslevelofpoverty.Whenall
measuresaretakenintoaccount,theburdenofCHDrangesfromBrazil's9.7
casespermilliongrossdomesticproduct(GDP)to297.5inKenya.By
comparison,theUnitedStates,despitealargenumberofcasesofCHD,hasa
CHDtoGDPratioofonly2.2,duetotheirhighGDP.Thisiswhatwemean
whenwesaythatbyregion,AfricaandsouthAsiahavethegreatestburdenof
heartdisease.Thefullsocioeconomicimpactofthediseasescanbemeasured
relativetotheenvironmentsinwhichtheyoccur.Higherbirthratesandlower
economicdevelopmentmeanthattheoverwhelmingglobalburdenofpediatric
heartdiseasefallsonthehealthsystemsleastequippedtodealwithit.
TheWorldHealthOrganizationreportedtheannualyearsofhealthylifelost
(2011)duetothedisabilityofCHDat19.8milliondisability-adjustedlifeyears
(DALYs).9Bycomparison,childhoodclusterdiseases(whoopingcough,
diphtheria,measles,andtetanus)accountedfor23.5millionDALYs.From2000
to2012,theburdenofchildhoodclusterdiseasesdecreasedby70%,whereasthe
DALYsfromCHDremainedconstant.
GlobalBurdenofRheumaticHeartDisease
ThemostrecentestimatedprevalenceofRHDbasedontheGBDdata(2015)in
allagegroupsis33.4million(95%uncertaintyinterval[UI],29.7to43.1
million).Therewereanestimated319,400deaths(95%UI,297,300to337,300)
or10.5million(95%UI9.6to11.5million)DALYsfromRHDgloballyin
2015.10Itisestimatedthattherehasbeenanearly50%declineindeathsfrom
RHDgloballyin2015whencomparedwithestimatesfrom1999.
Notwithstandingthisdecline,thereisstillasubstantialburdeninselected
regionsinSouthAsia,thePacificIslands,andSub-SaharanAfrica;many
indigenouscommunitiesinAsiaandPacificcontinuetoshowahighprevalence
ofrheumaticfever(RF)andRHD.11
TherearemanychallengestoobtainingcorrectestimatesofRHD.SchoolbasedsurveysarethemostcommonlyusedmethodsforestimatingRHD
prevalenceinchildrenandadolescents.Studiesusingechocardiography-based
methodsofmeasuringprevalenceinschoolchildrenhavedemonstratedanearly
10-foldhigherprevalenceofvalvarabnormalities,comparedwithprevalence
reportedusingclinicaldiagnosticmethods.11Littleisknownaboutthenatural
historyoftheseasymptomaticcasescomparedwiththesmallernumberof
symptomaticcasesthathavetraditionallybeenreported.12
ItisalsoimportanttorecognizethattheworstaffectedregionswithRHDare
mostdifficulttosurveyoftenbecauseofaseriousdeficienciesinprimaryhealth
carethataffecttheperformanceofaccuratesurveys.Becauseitisnotmandatory
toreportacuteRFormaintainregistriesinmanycountries,theincidenceofnew
casesofRFishardtoestimate.Furthermore,itisincreasinglyobviousthatmany
patientsofRHDdonotrecalldiscreteepisodesofRF.
PediatricCardiacCareinLow-and
Middle-IncomeCountries
Low-andmiddle-incomeeconomiesarecurrentlyclassifiedonthebasisof
annualgrossnationalincomepercapita(<$12,736percapita).Thethresholdfor
low-incomecountriesis$1045orlessgrossnationalincomepercapita.Lowandmiddle-incomegroupstakentogetherarealsoreferredtoasthedeveloping
world.13
LMICsarenotuniformintermsoftheiraccesstohealthcareandtherefore
developmentofpediatricheartcare.AlthoughtherearelargepartsofAfricaand
SouthAsiawithhighinfantand“under-5”mortalityandvirtuallynoaccessto
pediatriccardiaccare,therearealsoexamplesofLMICssuchasSriLankaand
Cubathathaveachievedexcellentchildhoodhealthindicesandarenowseeking
todevelopcomprehensiveandaccessiblepediatriccardiaccare.Furthermore,
widedisparitiesareseenwithincountriesaswell.Thisisparticularlytruefor
largeanddiversenationssuchasIndiaandChina.ThetermHuman
DevelopmentIndex(HDI)hasbeendevelopedinanefforttoaddressthese
disparities.TheHDIisasummarymeasureofaverageachievementinkey
dimensionsofhumandevelopment:alongandhealthylife,being
knowledgeable,andhavingadecentstandardofliving.TheHDIisthe
geometricmeanofnormalizedindicesforeachofthethreedimensions.14
TheSDI,developedbyGBDresearchers,isasummarymeasureof
developmentthatuseslag-distributedincomeperperson,averageeducational
attainmentinthepopulationoverage15years,andthetotalfertilityrate.The
SDIcorrelatesreasonablywellwithHDIandiseasytoobtain.15
Approximately85%oftheworld'spopulationliveinLMICs.16Recognizing
thatbirthratesinaregionareinverselyrelatedtoincomeandhuman
development,itcanbeestimatedthatmorethan90%oftheworld'schildrenwith
CHDareborninLMICs.AlthoughCHDisunlikelytobeperceivedasa
pediatrichealthpriorityinregionswithrelativelyhighinfantmortalityrates
(IMRs),itisincreasinglyimportantastheIMRdeclines.13Adecliningtrendin
IMRisnowbeingwitnessedinalmosteverypartoftheworldexceptforregions
thatareaffectedbyarmedconflict.Thisdeclineisalmostentirelyattributableto
reductionsinmortalityfromcommunicablediseases.Congenitalheartdefects
havebeguntosurfaceasasignificanthealthproblemamonginfantsand
