Children hospitalized between 01/01/1999 and 12/31/2012 n=1230 Children registered in the PTN-MG screening registry n=1038 3368 hospitalizations 3071 hospitalizations 91.2% 2994 hospital
Trang 1Ana Paula P.C Fernandesa, Fernanda A Avendanhaa, Marcos B Vianaa , b , ∗
aUniversidade Federal Minas Gerais (UFMG), Faculdade de Medicina, Núcleo de Ac ¸ões e Pesquisa em Apoio Diagnóstico (Nupad), Belo Horizonte, MG, Brazil
bUniversidade Federal Minas Gerais (UFMG), Department of Pediatrics, Belo Horizonte, MG, Brazil
Received4April2016;accepted27July2016
KEYWORDS
Department;
Epidemiology;
Brazil
Abstract
Objective: ToidentifyandcharacterizehospitaladmissionsandreadmissionsintheBrazilian UnifiedPublicHealthSystem(SistemaÚnicodeSaúde[SUS])inchildrenwithsicklecelldisease diagnosedbytheMinasGeraisNewbornScreeningProgrambetween1999and2012
Methods: Hospital Admission Authorizations with the D57 (International Classification of Diseases-10)codeinthefieldsofprimaryorsecondarydiagnosiswereretrievedfromtheSUS Databank(1999 -2012).Therewere2991hospitalizationsfor969children
Results: 73.2%ofchildrenhadhemoglobinSS/S0-thalassemiaand48%weregirls.Themeanage was4.3±3.2years,themeannumberofhospitalizations,3.1±3.3,andthehospitallengthof stay,5±3.9days.Hospitalreadmissionsoccurredfor16.7%ofchildren;10%ofadmissionswere associatedwithreadmissionwithin30daysafterdischarge;33%ofreadmissionsoccurredwithin sevendays post-discharge.Therewere41deaths, 95%ofwhichwerein-hospital.Secondary diagnoseswerenotrecordedin96%ofadmissions,makingitimpossibletoknowthereasonfor admission In62%ofcases,hospitalizationsoccurredinthechild’scountyofresidence.The total numberofhospitalizationsofchildren under14withsicklecelldisease relativetothe totalofpediatrichospitalizationsincreasedfrom0.12%in1999to0.37%in2012
夽 Pleasecitethisarticleas:FernandesAP,AvendanhaFA,VianaMB.HospitalizationsofchildrenwithsicklecelldiseaseintheBrazilian
Unified Health System in the state of Minas Gerais J Pediatr (Rio J) 2016 http://dx.doi.org/10.1016/j.jped.2016.07.005
夽夽StudycarriedoutatUniversidadeFederaldeMinasGerais(UFMG),BeloHorizonte,MG,Brazil.
∗Correspondingauthor.
E-mail:vianamb@gmail.com (M.B Viana).
http://dx.doi.org/10.1016/j.jped.2016.07.005
0021-7557/© 2016 Sociedade Brasileira de Pediatria Published by Elsevier Editora Ltda This is an open access article under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ).
JPED-457; No of Pages 7
Trang 2Conclusions: Ahighdemandforhospitalcareinchildrenwithsicklecelldiseasewasevident Thenumberofhospitalizationsincreasedfrom1999to2012,suggestingthatthediseasehas becomemore‘‘visible.’’Knowledgeofthecharacteristicsoftheseadmissionscanhelpinthe planningofcareforthesechildrenintheSUS
©2016SociedadeBrasileiradePediatria.PublishedbyElsevierEditoraLtda.Thisisanopen accessarticleundertheCCBY-NC-NDlicense(http://creativecommons.org/licenses/by-nc-nd/ 4.0/)
PALAVRAS-CHAVE
Pacientes;
Epidemiologia;
Saúde;
Brasil
Resumo
Objetivo: Identificar e caracterizar as internac¸ões e reinternac¸ões hospitalares no Sistema Únicode Saúde(SUS)decrianc¸ascomdoenc¸a falciforme,diagnosticadaspeloPrograma de TriagemNeonataldeMinasGeraisentre1999e2012
Métodos: Extraíram-sedobancodedadosdoSUSasAutorizac¸õesdeInternac¸ãoHospitalarcom
ocódigoD57(Classificac¸ãoInternacionaldeDoenc¸as10)noscamposdediagnósticoprimárioou secundário(1999-2012).Identificaram-se969crianc¸as,totalizando2.991internac¸ões
Resultados: 73,2%dascrianc¸astinhamhemoglobinaSS/S0-talassemiae48%erammeninas.A médiadeidadefoide4,3±3,2anos,adonúmerodeinternac¸ões,3,1±3,3eadotempode permanência,5±3,9dias.Asreadmissõeshospitalaresocorreramem16,7%dascrianc¸as;10% dasinternac¸õesseassociaramàreadmissãoematé30diaspós-alta;33%dasreadmissões ocor-reramematé7diaspós-alta.Ocorreram41óbitos,95%emambientehospitalar.Odiagnóstico secundárionãofoiregistradoem96%dasinternac¸ões,impossibilitandoconheceromotivoda internac¸ão.Em62%doscasos,asinternac¸õesocorreramnomunicípioderesidênciadacrianc¸a
Ototaldeinternac¸õesdecrianc¸asaté14anoscomdoenc¸afalciformeemrelac¸ãoaototaldas internac¸õespediátricaspassoude0,12%em1999para0,37%em2012
Conclusões: Constatou-seelevadademandaporcuidadoshospitalares,cujoaumentorelativo entre1999e2012sugereincrementoda‘‘visibilidade’’dadoenc¸afalciforme.Oconhecimento dascaracterísticas dessasinternac¸ões podecontribuir noplanejamentodocuidado narede assistencialdoSUS
©2016SociedadeBrasileiradePediatria.PublicadoporElsevierEditoraLtda.Este ´eumartigo OpenAccess sobumalicenc¸aCCBY-NC-ND(http://creativecommons.org/licenses/by-nc-nd/ 4.0/)
Introduction
(SCD)is ageneticdisorderofgreatclinical and
epidemio-logicalimportance,whosebasicetiologyistheinheritance
ofthebeta S-globingene,eitherin thehomozygousstate
orcombinedwithanothermutantallelethatpathologically
interactswithhemoglobinS InBrazil,thenumberof
peo-plewithSCDisestimatedat25,000 -30,000andthenumber
ofnewbornsisestimatedat3500ayear.4Accordingtothe
Neonatal Screening Program of the state of Minas Gerais
(PTN-MG),the incidence ofthe sickle celltraitis 3.3% in
atotalofapproximately250,000newbornsayear;theSCD
rateisapproximately1:1400.5
The onsetof the disease’s clinical manifestations
usu-allyoccursaftertheageof3monthsandlaststhroughout
life, with a marked variation in severity between the
affected individuals They can be grouped according to
twobasic pathophysiologicalevents: vasoconstrictionand
chronichemolysis.6 -8Clinicaleventssuchaspainfulcrises,9
bacterial infections, acute chest syndrome, and chronic complicationsleadtoseveralhospitaladmissions andhigh morbidity.Althoughmostofthehealthproblemsof individ-ualswithSCDcanbecaredforinprimarycareservices,some acuteevents,includingseverevaso-occlusivecrises,require repeatedhospitaladmissions.10
Therearefewnationalbibliographicalreferencesonthe epidemiologicalaspectsofhospitaladmissionsbySCD.The aimofthisstudywastodescribethehospitaladmissionsof childrenwithSCDthatwerescreenedbytheStateNeonatal ScreeningProgram,inhospitalunitsoftheBrazilianUnified HealthSystem(SUS),inMinasGerais,basedoninformation contained in the database of the SUS Hospital Informa-tionSystem(SIH).Associationsbetweenhospitaladmissions andclinicalandepidemiologicalvariableswerealso inves-tigated
Methods
Trang 3Results
7.00
6.00
5.00
4.00
3.00 2.27 2.12 2.46
3.07 3.26
3.98
5.33 5.73 5.52
1.32
1999 2000 2001 2002 2003 2004
Year
2005 2006 2007 2008 2009 2010 2011 2012
1.11 1.08 1.08 1.03
0.87 0.88 0.83 0.88 0.79 0.87 0.92 0.79 1.09
2.00
1.00
0.00
ICD10-D57 hospitalizations/100,000 inhab.
Children diagnosed with SCD by PTN-MG/100,000 inhab.
Figure 1 Rateofscreenedchildrenwith sicklecelldisease andrateofICD10-D57hospitalizations(sicklecelldisorders)as primaryorsecondarydiagnosisper100,000residentsayearin MinasGerais,from1999to2012
Fig.1showstherateofchildrenscreenedwithSCDandthe hospitalizationrateof patients withICD10-D57 registryin AIHsper100,000residentsinMinasGerais Thesame 2.4-foldincreaseinthehospitalizationrateisobserved
Oftheaforementioned numberof9020hospital admis-sions,3368wereselected,relatedtochildrenbornbetween 01/01/1999and12/31/2012.Fig.2illustrateshowthe num-berof2991hospitalizationswasobtained,correspondingto
969childrenwhocomprisedthestudysample
Table1showstheclinicalanddemographic characteris-ticsof969childrenand2991hospitalizations.Mostchildren hadHbSSand anevenhigher percentagecorresponded to hospitalizationsof children with HbSS Medianage at the hospitaladmissionswas4years.Themediannumberof hos-pitalizationsperpatientwastwo(interquartilerange:1 -4) Themedianlengthofhospitalstaywasfourdays.CodeD57.0 (sicklecellanemiawithcrisis)wastheonemostfrequently recordedintheAIHs
Thepercentageofhospitalizationsamongchildrenwith SCD aged 0 -14 years in relation to the total number of pediatrichospitalizationsintheSUSinthesameagegroup (SIH-SUS data) increased approximately three-fold in the studyperiod,from0.12%in1999to0.37%in2012
WhencomparinghospitaladmissionsforSCDwith hospi-taladmissions for otherchronic diseases inthe agegroup 0 -14 years (data from the SIH-SUS), it is observed that thefrequencyofhospitalizationsforSCDduringtheperiod increased three-fold, being similar to the frequency of admissionsforcerebralpalsyanddiabetesmellitusin2012 The frequency of hospitalizations per patient is shown
in Table 2 Note that 26.9% of the patients with four or morehospitalizationswereresponsiblefor62.6%ofhospital admissions.The2 -4and5 -9yeargroupsshowednotonlya highernumbersofhospitalizations,butalsoahighermean
ofhospitalizationsperpatient
Intotal,162 patients(16.7%)underwenthospital read-missionwithin30daysduringthestudyperiod.Mostofthem hadonlyonereadmission(63%)andtheremainderfromtwo
toseven.The meanintervalbetweenhospitalizations was
Trang 4Children hospitalized between 01/01/1999 and 12/31/2012 (n=1230)
Children registered in the PTN-MG screening registry (n=1038)
3368 hospitalizations
3071 hospitalizations (91.2%)
2994 hospitalizations (88.9%)
2991 hospitalizations (88.8%)
Children followed by Nupad (Nucleus ofActions and Research in Diagnostic Support) (n=969)
Children without consultations registered by PTN-MG (n=1)
77 hospitalizations (2.3%)
3 hospitalizations (0.1%)
Children with sickle cell disease (n=970)
Children with other diagnoses (n=68)
297 hospitalizations (8.8%)
Children not located in the MG-NTP screening registry (n=192)
Figure 2 Flowchartofthestudiedsampleselectionbasedonthe3368SUShospitaladmissionswithICD10-D57asthemainor secondarydiagnosis,from1999to2012,regardingchildrenbornfromJanuary1999toDecember2012
Table 1 CharacteristicsofSUShospitalizationswithcodeD57,fromJanuary1999toDecember2012,ofthescreenedchildren withsicklecelldisease,bornbetweenJanuary1999andDecember2012
Hospitalizations
(n=2991)
n% Patients
(n=969)
n%
Gender
Genotype
Diagnosis of ICD-10 D57b
-a The number of children with Hb Sß + tal and Hb SD Punjab may be overestimated, as molecular biology methods for diagnostic confir-mation were introduced in the PTN-MG only in 2010.
b D57.0, sickle cell anemia with crisis; D57.1, sickle cell anemia without crisis; D57.2, double heterozygous sickle cell disorders; D57.3, sickle cell trait; D57.8, other sickle cell disorders.
c Code D57.3 (sickle cell trait) was erroneously reported in the SIH-SUS, as it refers to children with a definite diagnosis of sickle cell anemia at the screening test of the Neonatal Screening Program of Minas Gerais.
Hb SS, homozygous inheritance for Hb S; Hb SD Punjab , association between Hb S and the hemoglobin variants D-Punjab; Hb SC, association between Hb S and C
Trang 5Table 2 Distributionofthefrequencyofhospitalizationperpatient,fromJanuary1999toDecember2012.
period
registry
Comparison of hospitalizations up to 4 years
of life of 287 children born between 1999 and
2001 ( n = 129) with those born between 2006 and 2008 ( n = 158)
Discussion
Trang 6Thisincreasebecamemoreevidentwhentheinitialand
finalperiodsofthepresentstudywerecompared.The
num-berofchildrenwithatleastonehospitaladmissionand,still
moreevidently,thetotalnumberofadmissionsweremuch
higherin the mostrecent periodin relation tothe initial
one.Additionally,thefrequencyofadmissionsperchildwas
alsohigherinrecentyears
This absolute and relative increase could be simply
explainedbytheincreaseinthefrequencyofhospital
admis-sions for SCD to the detriment of other causes, resulting
fromchangesinSCDhospitalcareguidelinesbetween1999
and2012,whichareunknowntotheauthors.Thatdoesnot
seemthemostplausiblereason,though.Itisbelievedthat
thebroaderknowledge ofthedisease,both bythe family
members and by the health professionals, resulting from
theinitiationofthestatescreeningprograminMarch1998,
accounted for the more frequent registration of the D57
group codes in the AIHs Asimilar phenomenon has been
recentlyreportedinthestateofMaranhão.12
The discrepancy caused by the‘‘invisibility’’ of SCDis
also evident in a study that found the rate of
hospital-ization for SCD is much higher in São Paulo and Rio de
Janeirothan inBahia,wherethe incidenceofthedisease
isapproximatelyfiveandtwo-foldhigherthanintheother
twostates,respectively.3Anotherindicationofthedisease’s
‘‘invisibility’’is thefindingthathalf ofthe193 children’s
deathcertificatesrecordedbythePTN-MGdidnotinclude
theterm‘‘sicklecell.’’13
TheprevalenceoftheSSgenotypeinhospitaladmissions,
asinotherstudies,isexplainedbythemoresevereclinical
courseofthedisease.14,15Themostfrequentcauseof
hospi-talization,asobservedinotherstudies,3,16 -19wasthepainful
crisis,ascodeD57.0(sicklecellanemiawithcrisis),which
intheabsenceofadditionaldataintheAIHswasinterpreted
bytheauthorsasapainfulcrisisthatrequired
hospitaliza-tion.The mean length ofstay offive dayscoincides with
thatofotherstudies,whichobservedarangeof4 -11days
forhospitalizationsduetovaso-occlusivecrises.19 -21
The regional distribution of hospitalizations followed
whatwasexpectedofthe hospitalnetworkconcentration
in MG at regional poles In more than half of the
hospi-talizations in Belo Horizonte, the children lived in other
municipalities,mainlyinthemetropolitanregion.Similarly,
buttoalesserextent,thesameoccurredinJuizdeFora,
Uberaba,andUberlândia
Themeancostofhospitalizationin2012disclosedbythe
presentstudywasUS$186.00,wellbelowthemeancostof
US$344.6dollars11forpediatrichospitalizationsingeneral,
consistentwiththeshorterhospitallengthofstay,
charac-teristicofthemostfrequentcauseofhospitaladmission,the
painfulcrisis.InastudycarriedoutinNigeria,themeancost
ofhospitalizationwasUS$133dollars22and,asexpected,it
waslowerthanthatoftheUnitedStates.23
Thelimitationsfoundinthepresentstudyareassociated
tothe qualityof the datain the AIH recordsor, possibly,
tothetransferofdatarecordedbythehealthprofessionals
to the system database Record failures, characterized primarilybytypingerrors,misinformation,ormissingdata, representthemostsignificant difficultiesforsearches car-riedoutinlargepublicdatabases.Anextensive‘‘database scanning’’ was required, compiling and cross-referencing informationtoreduceerrorsandapproximatethecollected data totheactual data Nonetheless,thebroad epidemi-ological studies onSCD basedon governmentaldatabases should be considered valid as sources of information,
as after the management of these systems by diverse professionals,withdifferentinterests,itwillbepossibleto identifyfailuresandimplementimprovements
Simpleinterventionsandbasic healthcare providedby morefrequentfollow-upatthebasichealthunit,inaddition
tothatperformedinbloodcentersandothersecondarycare units,promptrecognitionofthewarningsignsforpotentially severesituations,andimmediatesearchformedical assis-tancemaydetermine,overtime,alowerneedforhospital admissions
Inthissense, theeducationofthe patientandhis/her family, as well as of the health professionals, focusing
on empowering of the knowledge about the disease and co-responsibilityregardingthecareandtreatmentare chal-lengestobeovercome.Inrelationtothecare network,it
isnecessarytotrainthemultiprofessionalteamandinclude theinformationaboutthediseaseinthefilesoftheprimary careinformationsystem,toexpandandimprovetheinitial careprovidedbytheemergencyservicestoindividualswith SCD,toincludethediseaseintheparametersofrisk regu-lationandclassification,aswellastoinstituteintegralcare
ofindividualswithSCDwithinthescopeofSUS
It is expected that epidemiological research, not only
in SCD, but also regarding other prevalent conditions
or with a more severe evolution in the black popula-tion, be encouraged and facilitated in the institutional databases,respectingtheethicalrequirements of secrecy andanonymity
Theauthorsexpectthatthecontributionstothe knowl-edge on hospital admissions of children with sickle cell disease in Minas Gerais can support the planning and implementationof actions thatwill leadtothe reduction
of morbimortality determined by the disease and to the improvementofthequalityoflifeofindividualswithSCD
Funding
Conflicts of interest
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