www.jped.com.br
ORIGINAL
ARTICLE
Translation
and
validation
of
the
Brazilian
version
of
the
Cerebral
Palsy
Quality
of
Life
Questionnaire
for
Children
---
child
report
夽
Lígia
M.P.
Braccialli
a,∗,
Vanessa
S.
Almeida
a,
Andreia
N.
Sankako
a,
Michelle
Z.
Silva
a,
Ana
C.
Braccialli
a,
Sebastião
M.R.
Carvalho
a,
Alessandra
T.
Magalhães
baFaculdadedeFilosofiaeCiências,UniversidadeEstadualPaulista(UNESP),Marília,SP,Brazil bUniversidadeFederaldoPiauí(UFPI),Parnaíba,PI,Brazil
Received3November2014;accepted27May2015 Availableonline14December2015
KEYWORDS
Qualityoflife; Cerebralpalsy; Child
Abstract
Objective: ToverifythepsychometricpropertiesoftheCerebralPalsy:QualityofLife Question-naireChildren---childreport(CPQol-Child)questionnaire,afteritwastranslatedandculturally adaptedintoBrazilianPortuguese.
Methods: AfterthetranslationandculturaladaptationofthetoolintoBrazilianPortuguese,the questionnairewasansweredby65childrenwithcerebralpalsy,aged9---12years.Theintraclass correlationcoefficientandCronbach’salphawereused toassess thereliabilityandinternal consistencyofthetoolanditsvaliditywasanalyzedthroughtheassociationbetween CPQol-Child:self-reporttoolandKidscreen-10usingPearson’scorrelationcoefficient.
Results: Internalconsistencyrangedfrom0.6579to0.8861,theintraobserverreliabilityfrom 0.405 to0.894, and the interobserver from 0.537 to0.937. There was aweak correlation between the participation domain and physicalhealth of CPQol-Child: self-reporttool and Kidscreen-10.
Conclusion: TheanalysissuggeststhatthetoolhaspsychometricacceptabilityfortheBrazilian population.
©2015PublishedbyElsevierEditoraLtda.onbehalfofSociedadeBrasileiradePediatria.
夽
Pleasecitethisarticleas:BraccialliLM,AlmeidaVS,SankakoAN,SilvaMZ,BraccialliAC,CarvalhoSM,etal.Translationandvalidation oftheBrazilianversionoftheCerebralPalsyQualityofLifeQuestionnaireforChildren---childreport.JPediatr(RioJ).2016;92:143---8.
∗Correspondingauthor.
E-mail:[email protected](L.M.P.Braccialli).
http://dx.doi.org/10.1016/j.jped.2015.05.005
PALAVRAS-CHAVE
Qualidadedevida; ParalisiaCerebral; Crianc¸a
Traduc¸ãoevalidac¸ãodaversãobrasileiradoQuestionáriodequalidadedevidade crianc¸ascomparalisiacerebral---autorrelato
Resumo
Objetivo: Verificar as propriedades psicométricas da versãotraduzida e adaptada cultural-menteparaoportuguêsdoBrasildoinstrumentoCerebralPalsy:QualityofLifeQuestionnaire Children---childreportquestionnaire.
Métodos: Apósatraduc¸ãoe aadaptac¸ãocultural doinstrumentopara oportuguês o ques-tionáriofoirespondidopor65crianc¸ascomparalisiacerebral,comidadeentre9e12anos. Oscoeficientesdecorrelac¸ãointraclasse ealfadeCronbach foramutilizadospara avaliara confiabilidadeeconsistênciainternadoinstrumentoeavalidadedoinstrumentofoianalisada pelarelac¸ãoentreCPQol-Child:self-reporttooleaKidscreen-10pormeiodoCoeficientede Correlac¸ãodePearson.
Resultados: Aconsistênciainternavarioude0,6579a0,8861,aconfiabilidadeintraobservador de0,405a0,894eainterobservador0,537a0,937.Verificou-seumafracacorrelac¸ãoentreo domínioparticipac¸ãoesaúdefísicadaCPQol-ChildeKidscreen-10.
Conclusão: A análise realizada sugere que o instrumento utilizado tem aceitabilidade psi-cométricaparaapopulac¸ãobrasileira.
©2015PublicadoporElsevierEditoraLtda.emnomedaSociedadeBrasileiradePediatria.
Introduction
Cerebral palsy (CP) is a group of movement and posture disordersthat causes limitations in activities due to non-progressivealterationsthatoccurinthefetalorinfantbrain, usuallyaccompaniedbysensory,cognitive,communication, perception,behavioralterations,and/orseizures.1Itisthe
mostcommoncauseofmotordisabilityinchildhood,2with
an incidence in developed countries of 2---2.5/1000 live births.3AlthoughthereisnoaccuratedatainBrazil,some
authorsestimateanincidenceof7/1000livebirths.4
Theneedtoknowtheeffectsofthediseaseonthehealth and well-being has resulted in several efforts to develop toolstoassessthequalityoflife(QOL)ofthesechildren,5
mainlytools inwhichtherespondentisthechilditself,as thereappearsto bea discrepancybetween self-report of children and adolescents and their caregivers, especially regardingtheemotionalaspects.6---8Thereisevidencethat
children can reliably answer the QOL self-report if their emotional development, cognitive capacity, and reading levelareconsidered9;however,onemustbecautiousabout
thereliabilityofinformationprovidedby veryyoung chil-dren, aswell asby those withcognitive deficit or severe communicationimpairment.
Currently, there are generic tools to assess QOL of children that have been translated and validated for the Portugueselanguage,buttheydonotaddressspecific char-acteristicsof CP. A specific toolmust beused in CP,i.e., one that addresses the feelings on assistive technology equipment;feelingsaboutmedical, therapeuticand surgi-calinterventions; satisfactionwithaccesstoservices;and acceptanceinthecommunity.These issuesgobeyondthe scope of a generic tool, which usually omits information on the daily lives of these children and do not address the point of view of children with CP, generating doubts whethertheycorrespondtotheiropinion.10---12Astudy
car-riedoutin200711identifiedonlytwospecifictoolstoassess
QOLofchildrenwithCP;theDISABKIDS-Cerebralpalsyand the CerebralPalsy: Qualityof Life QuestionnaireChildren (CPQol-Child).12
TheCPQol-Child:self-reporttoolisconsideredasatool withstrongpsychometricpropertiestoassessQOLinthese schoolchildren,10andhasbeenwidelyused.
Theauthors of theCPQol-Child: self-report tool devel-oped a tool based on the International Classification of Functioning, Disability and Health(ICF), with the help of a team of international experts, and took into account the views of the child and caregivers. The questionnaire hastwoversions,theCPQol-Child:self-reporttoolPrimary CaregiverQuestionnaire(4---12years)andCPQol-Child:Child ReportQuestionnaire(9---12years).The CPQol-Child:Child Report Questionnaire(9---12 years) version is answered by children with CP aged 9---12 years and contains 53 ques-tionsdistributedinthefollowingdomains:socialwell-being and acceptance, functionality, participation and physical health, emotional well-being and self-esteem, access to services, and pain and impact of the disability.12,13 The
versionforcaregivershasalreadybeentranslatedinto dif-ferentlanguages.14---17TheWorldHealthOrganization(WHO)
recommends the translation and cultural adaptation of existingtoolsbecauseitfacilitatesthecomparisonof stud-iesconductedindifferentcountriesandthecommunication betweenresearchers.18
From this perspective, this study aimed to determine the psychometric properties ofthe translatedand cultur-allyadaptedversionfortheBrazilianPortugueseofthetool CPQol-Child:ChildReportQuestionnaire---9---12years.
Materials
and
methods
approvedby the ResearchEthicsCommitteeof Faculdade deFilosofiaeCiências,underN.278/2009.
Participants
Tocalculatetheminimumsamplesize,acorrelation coeffi-cientequaltoor greaterthan0.40wasconsideredfor the validity;forreproducibility,anintraclasscorrelation coeffi-cient(ICC)equaltoorgreater than0.40,atypeIerrorof 5%,andatypeIIerrorof20%,witha30%increasefor possi-blelossesorrefusals,resultinginaminimalsamplesizeof n=62.19
Theinitialsampleconsistedof200patientswithCP,from different regions of the country, and after verifying the inclusionandexclusioncriteria,65childrenwereselected. Theinclusioncriteriawereagebetween9and12yearsand CPdiagnosis. The exclusioncriteria wereany intellectual deficitsandlackofanefficientcommunicationsystem.
Thestudyusedaconveniencesampleduetotheaccess difficulties of theparticipants with thenecessary charac-teristics.AccordingtoMattar,20 anon-probabilisticsample
isaviablealternativewhenthepopulationisnotavailable tobedrawnbylotsandwhentherearetime,financial,and materialresourcelimitations.Theparents/guardianssigned aninformedconsentformandaconsenttermwasreadto thechildren.Theconsenttermwasread,explained,andthe childwasaskedforvoluntaryparticipation.Theagreement wasobtainedverballyornon-verballyduetothemotor diffi-cultiesshownbymanyoftheparticipants,whichprevented thesigningofthedocument.
Procedures
Theprocessoftranslationandadaptationfollowed interna-tionalrecommendations,21---23andthefollowingstepswere
carriedout:translation intoPortuguese; reconciled trans-lation;backtranslation;finaltranslation;pretest; cultural adaptation.
Firstly, two translators independently translated the CPQol-Child:self-reporttoolfromEnglishintoPortuguese. BothhadfluencyinEnglishandPortuguese,andPortuguese astheirnativelanguage.Thefollowingguidelinesweregiven tothetranslators:useanaturalandacceptablelanguagefor abroadaudience;makeaclear,simpleandunderstandable translation;avoidlongsentences;focusontheconceptual equivalenceratherthanliteraltranslation;considertheage oftherespondentsandhowtheywillunderstandtheitems; donotuse slangorterms thataredifficult tounderstand; avoidusingdoublenegatives.21
Subsequently,bothtranslationswerecomparedresulting in a reconciled translation that consisted of aconsensual versionwithitemadequacyandreconciliation.Atthisstage, thecollaborationofateamofresearchersthathad experi-encewithCPchildrenwasrequested.Theyhadtoanalyze item by item, choose the best translation, and suggest anothertranslationifnecessary.Theywereaskedtofocus ontheculturalandlinguistic differencesthatcouldcause difficultieswhentheEnglishversionwastranslatedinto Por-tuguese.
Then,anativeEnglishtranslatorfluentinPortuguesewas askedtocarryouttheback-translation,thatis,translatethe
reconciledtranslationintotheEnglishlanguage,whichwas sent tothe authors of the original questionnaire to iden-tifyandcorrectthediscrepanciesregardingthesemantic, idiomatic,andconceptualequivalence.
Thefourthstepconsistedinthereviewandcomparisonof theback-translatedversioncorrectedbythequestionnaire authorswiththeoriginalversioninEnglishthatgenerated thefinaltranslation,whichwasusedinthepretest.
Inthepretest,thefinalversionwasappliedtosixchildren withCPtoverify whether allitems were comprehensible andsatisfactory.Inordertotesttheculturalequivalence, thequestionsthatdidnotleadtoagoodunderstandingwere discussedonceagain,reformulatedbytheresearchers,and appliedtoanothergroupofsixchildren,untilallitemsofthe questionnairewereunderstoodby90%oftherespondents.24
After completion of this stage, an invitation was sent to researchers from Brazilian universities who work with children with CP to assist in the study. After the accep-tance,meetingswere held for training of the theoretical and methodological aspects of questionnaire application. At the training,the interviewers were instructed toread each question to the child and request an answer, which wasnotedin thequestionnaire. Theycouldnotmake any intervention or comment on the question or the answer. Theinterviewswerecarriedoutbytworesearchersineach regionofthecountry.Astherewasnointervention, expla-nation,orcommentsduringtheinterviews,thedifferences betweenevaluatorsdidnotinfluencetheanswers.
Fordatacollection,amappingofthenumberofchildren diagnosedwithCPandtheagerangeofthesechildrenwas performed.Twohundredchildrenwereidentifiedthatmet theestablished criteria and 65 familiesagreed that their children’sparticipationinthestudy.
Duringthecollection,eachchildwasinterviewedthree timesbytwodifferentinterviewers:I1andI2.InterviewerI1 carriedoutthefirstinterview,whenthePortugueseversion oftheCPQol-Child: self-report toolwasanswered(Fig.1) [onlineonly],andfilledoutaquestionnairewithinformation onthechild’sgender,age,levelofeducation,and classifi-cationaccordingtotheGrossMotorFunctionClassification System(GMFCS).Afteranintervalof30---60min,interviewer I2performedthesecondinterview,inwhichthechildonce againansweredthePortugueseversionoftheCPQol-Child. After14 days,athird interview wascarriedoutby inter-viewerI1,inwhichtheparticipantsansweredthePortuguese versionsofCPQol-Child:self-reporttoolandKidscreen-10.
The translated andvalidated versionfor Brazilian Por-tugueseoftheKidscreen-10questionnairewasusedtoverify constructvalidity.Thistoolwaschosenbecauseithasbeen showntobeeffectiveforthegenericassessmentofQOLin healthychildren,aswellasthosewithchronic conditions. This toolhas international qualitystandard andwas used bytheauthorsoftheCPQol-Child:self-reporttoolfor vali-dationoftheoriginal toolin Englishandhasbeenusedin thetranslationstothedifferentlanguagesandcultures.
TheGMFCSisaclassificationsystemofthemotorfunction levelofchildrenwithCPthathasbeenusedinternationally andallowsforstratificationintofiveskilllevels.LevelI rep-resents the bestgross motor skills and level V, the worst function,basedontheageoftheassessedchild.25
Table1 Children’sdemographiccharacteristics.
Variable n(%)
Age(years)mean±SD 10.5±1.25 Gender
Male 41(63)
Female 24(37)
GMFCSlevel
I 27(41)
II 18(27)
III 7(11)
IV 5(7)
V 9(14)
RegionofBrazil
Southeast 46(70)
South 04(06)
Midwest 05(08)
Northeast 07(11)
North 03(05)
version 22.0, NY, USA) to verify the score of each questionnaireanddomainforfuturestatisticalanalysis.
Statistical
analysis
Descriptivestatistics tocharacterize thestudy population wereperformed, aswell astests toverify the inter-and intra-observer reliability and internal consistency of the tool.
The interobserver reliability was evaluated based on measurementsmadeat the same timeby different inter-viewers, and the intraobserver reliability was assessed through test and retest, which consisted in completing thequestionnairetwice, withenough timebetweenthem to exclude the memory effect, but not long enough to avoid changes in QOL.11 The internal consistency of the
toolwasalsoassessed,whichconsistsinverifyingwhether therepeatedmeasures withinthesame scale are conver-gent,meaningthattheyaredirectedatthesamedirection, whethertheitemsineachdimensionformacoherentwhole, andwhethertheapproximateinternalcorrelationbetween itemsisrelativelystrong.11
The ICC andCronbach’s alphawere usedtoassess the tool’sreliabilityandinternal consistency.12,13 The ICCwas
considered excellent when ICC≥0.75; satisfactory when 0.4≤ICC<0.75and weak whenICC<0.419;p-values<0.05
were considered significant. As for the Cronbach’s alpha, measureswithareliability>0.5arerecommendedto com-pare groups of individuals.26 The construct validity was
analyzedusingPearson’scorrelationcoefficient.
Results
Table1showsthedatarelatedtothedemographic charac-teristicsofthechildrenwithCP.Therewasapredominance ofmaleswithGMFCSlevelI,althoughchildrenfromallstrata wereinterviewed.
The reliability of CPQol-Child: self-report tool ques-tionnairewasadequate,withCronbach’salphacoefficient
Table2 Internalconsistency oftheBrazilian Portuguese
versionoftheCerebralPalsyQualityofLifeQuestionnaire forChildren---childreport.
CPQOLchildsubscale Cronbach’s alpha E1
Cronbach’s alpha E2
Socialwell-beingand acceptance(12items)
0.8050 0.8490
Functionality(12items) 0.8861 0.8618 Participationandphysical
health(11items)
0.7975 0.7873
Emotionalwell-beingand self-esteem(6items)
0.8445 0.8445
Accesstoservices(3items) 0.6579 0.6579 Painanddisabilityimpact(8
items)
0.7758 0.7416
Table3 Intra-andinterobserverreliabilityofeachdomain
ofthePortugueseversionoftheCerebralPalsyQualityofLife QuestionnaireforChildren---childreportevaluatedbythe intraclasscorrelationcoefficient.
Domain Intraclasscorrelation coefficient(ICC)
Intra-observer (test---retest)
Inter-observer
Socialwell-being andacceptance
0.732 0.625
Functionality 0.894 0.725
Participationand physicalhealth
0.640 0.537
Emotional well-beingand self-esteem
0.600 0.848
Accesstoservices 0.562 0.937 Painanddisability
impact
0.405 0.675
>0.5foralldomains,forbothevaluators.Onlythedomain ‘‘accesstoservices’’showedvalues<0.7(Table2).
Table3showstheresultsofintra-andinterobserver reli-ability for each CPQol-Child: self-report tooldomain.The intraobserverreliability wassignificant for all domains; it wasconsideredexcellentforfunctionality(ICC≥0.75),and adequate for social well-being and acceptance, physical healthparticipation,emotionalwell-beingandself-esteem, access to services, and pain and impact of disability (0.4≤ICC<0.75). The interobserver reliability was signif-icant for all domains; it was considered excellent for emotional well-being and self-esteem, as well as for access toservices (ICC≥0.75), andsatisfactory for social well-beingandacceptance,functionality,participationand physical health, and pain and impact of the disability (0.4≤ICC<0.75).
Table4 CorrelationbetweenthedomainsoftheCerebralPalsyQualityofLifeQuestionnaireforChildren---childreportand Kidscreen10.
CPQOL-Child
SWA FU PPH EWB AS PI
Kidscreen10 0.216 0.164 0.277 0.190 −0.056 0.057
0.128 0.250 0.049 0.182 0.694 0.690
SWA,socialwell-beingandacceptance;FU,functionality;PPH,participationandphysicalhealth;EWB,emotionalwell-beingand self-esteem;AS,accesstoservices;PI,painanddisabilityimpact.
Discussion
ThestudyallowedforthecreationofthePortugueseversion of the CPQol-Child: self-report tool questionnaire, a spe-cifictoolthatassessesQOLofchildrenwithCP,whichwill allowmeasuringandcomparingtheQOLofBrazilianchildren basedontheself-report andmight contributetoestablish publicpolicyparametersinhealthandeducation,andalso verifytheeffectiveness ofthedeveloped therapeutic and preventiveactionsappliedtothispopulation.
The methodology used followed experts’ recommendations22,23 and ensured an appropriate
ver-sion of the tool regarding the cultural aspects of the Brazilianpopulation,andequivalenttotheoriginalversion inEnglish.
Regarding thecharacteristicsof thestudy participants, theauthorsaimedtoensuretherepresentativenessofthe populationandthedifferenttypesofCP,althoughtherewas apredominanceofparticipantsfromtheSoutheastregion. Itis noteworthythatthe studyincluded participantsfrom differentregionsofthecountrytoensurethatthe multicul-turalcharacteristicsofBrazildidnotresultindifficultiesto understandsomeofthequestionsandprovidetheanswers.17
ThestudyresultsindicatedthatthePortugueseversionof CPQol-Child:self-reporthadreliabilityandvaliditytoassess theQOLofBrazilianchildrenwithCPagedbetween9and 12years.
Severalauthorshaveemphasizedtheimportanceof val-idatingaquestionnaireforchildrenthroughself-report,as childrenandadolescentshavedifferentdegreesof percep-tionofthemselvesandtheworld,andtherefore,adifferent viewoftheirQOL.Theperceptionofadults,eventhosewho liveinclosecontactwiththechildren,hasingeneralalow degreeofcorrelationwiththechild’sselfassessment.6,7,27It
shouldbenotedthatfactorssuchasage,severityofmotor impairment,andfunctionalityaffecttheQOLofindividuals withCPand,withincreasingage,thelevelofparticipation ofthese childrenin activitiesdecreases atthe sametime astheircapacityfor reflectionincreases,whichinterferes withtheirperceptionofQOL.28
Thedataindicatedahighdegreeofinternalconsistency, whicharesimilarresultstothosefoundintheoriginal ver-sionofCPQol-Child:self-report.13
The lowest value obtained in ICC for test---retest reli-ability (0.405) was for the domain ‘‘pain and impact of disability’’;however,theinterobserverICCforthisdomain hadahighervalue(0.675),whichmayindicatethefactthat the question is directed to a subjective state that could changeduringthe14-dayperiod,thetimerequiredbetween
thefirstandsecond assessments.Thedomain ‘‘emotional well-beingand self-esteem’’, which had a value of 0.600 intheintraobserverassessment,alsoreferstothe subjec-tiveevaluationthatcanexhibitchangesinashortperiodof time.However,thevalueobtainedforthedomain‘‘access toservices’’intheintra-observerassessmentmayindicate thattherewasadifficultyinunderstandingthisdomainby thestudyparticipants.
Regardingconstructvalidity,theweakcorrelationfound forthedomain‘‘participationandphysicalhealth’’differs fromthe results by Davis et al.,5 whofound a moderate
correlation. However, as stated by those authors, there areconceptualdifferencesbetweenthesetools,commonly usedto assess QOL of children with CP, which may have affected the results. The CPQol-Child: self-report tool is aspecifictooltoassess QOLofchildrenwithCPandaims tounderstandhowthechildfeelsaboutaspectsofhis/her life regarding different domains, while the Kidscreen-10 is a generic toolon health-related children’s QOL that is easy to be applied, but offers only a summarized score. Thehealth-relatedQOLassessmentusingasinglevaluecan missinformationrelatedtosomephysicalandpsychosocial aspects.29
Thestudyhadlimitations,especiallyregardingthelack of additional data on the socio-economic characteristics, theheterogeneousdistributionofthesamplebetweenthe regions, and the prevalence of children with levels Iand II of GMFCS. There was a greater sample loss in some regions of the country, as they did not meet the inclu-sion criteria. The prevalence of children at these levels occurredbecausechildrenwithmoresevereCPoftenhave associated comorbidities, such as intellectual deficit and severecommunicationproblems,whichpreventedtheir par-ticipation in the study. However, it is believed that the questionnairecanbeusedsafelyandreliablyinanyregion ofthecountry,aslongastherespondentsmeetthecriteria establishedintheuser’smanual.
TheBrazilianversionoftheCPQol-Child:self-reporttool showedadequatepsychometricpropertiesandisareliable tool,easytounderstand,andeasilyapplicabletoevaluate theQOLofBrazilian’schildrenwithCPthroughself-report. The access to the questionnaire can be attained by registering at the website http://www.cpqol.org.au/ questionnairesmanuals.html.
Funding
Conflicts
of
interest
Theauthorsdeclarenoconflictsofinterest.
Acknowledgements
Theauthors wouldliketothankElizabeth Watersandher teamfor permissiontotranslatethetool.Theyalsothank CNPqforthefinancialsupport.
Appendix
A.
Supplementary
data
Supplementary data associated with this article can be found, in the online version, at doi:10.1016/j.jped. 2015.05.005.
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