www.bjorl.org
Brazilian
Journal
of
OTORHINOLARYNGOLOGY
ORIGINAL
ARTICLE
Translation
and
cultural
adaptation
of
the
Shame
and
Stigma
Scale
(SSS)
into
Portuguese
(Brazil)
to
evaluate
patients
with
head
and
neck
cancer
夽
William
Eduardo
Pirola
a,∗,
Bianca
Sakamoto
Ribeiro
Paiva
a,b,
Eliane
Marc
¸on
Barroso
b,
David
W.
Kissane
c,
Claudia
Valéria
Maseti
Pimenta
Serrano
d,
Carlos
Eduardo
Paiva
a,b,eaHospitaldeCâncerdeBarretos,ProgramadePós-graduac¸ãoStrictoSensuemOncologia,Barretos,SP,Brazil
bHospitaldeCâncerdeBarretos,GrupodePesquisaemCuidadosPaliativoseQualidadedeVidaRelacionadaàSaúde(GPQual),
Barretos,SP,Brazil
cMonashUniversity,DepartmentsofPsychiatryandPalliativeCare,SchoolofClinicalSciencesatMonashHealth,Victoria,
Australia
dFaculdadedeCiênciaeLetrasdeBebedouro,Graduac¸ãoemLetras,Bebedouro,SP,Brazil
eHospitaldeCâncerdeBarretos,DepartamentodeOncologiaClínica,DivisãoMamaeGinecologia,Barretos,SP,Brazil
Received30June2016;accepted14October2016 Availableonline9November2016
KEYWORDS Qualityoflife; Shame; Socialstigma; Headandneckcancer
Abstract
Introduction:Headandneckcanceristhesixthleadingcauseofdeathfromcancerworldwide anditstreatmentmay involvesurgery,chemotherapy and/orradiationtherapy.Thesurgical proceduremaycausemutilatingsequelae,thatcanalterpatientself-image.Thus,headand neckcancer isoften connected tothe negativestigma with decreasedquality oflife.Few studiesassessthesocialstigmaandshameperceivedbypatientswithheadandneckcancer. Objective: ToperformthetranslationandculturaladaptationoftheShameandStigmaScale (SSS)intoPortuguese(Brazil).
Methods:Twoindependenttranslations(EnglishintoPortuguese)werecarriedoutbytwo pro-fessionalsfluentintheEnglishlanguage.Afterthesynthesisofthetranslations,twoindependent back-translations (from Portugueseinto English) were performed by two translators whose nativelanguageisEnglish.Alltranslationswerecriticallyassessedbyacommitteeofexperts consistingoffivemembers.Asampleof15patientsansweredtheBrazilianPortugueseversion oftheSSStocarryoutthepretest.Atthisstep,thepatientswereabletosuggestmodifications andevaluatetheunderstandingoftheitems.
夽 Pleasecitethisarticleas:Pirola WE,PaivaBS,BarrosoEM, KissaneDW,SerranoCV,PaivaCE.Translation andculturaladaptation
oftheShameandStigmaScale(SSS)intoPortuguese(Brazil)toevaluatepatientswithheadandneckcancer.BrazJOtorhinolaryngol. 2017;83:697---704.
∗Correspondingauthor.
E-mail:[email protected](W.E.Pirola).
PeerReviewundertheresponsibilityofAssociac¸ãoBrasileiradeOtorrinolaringologiaeCirurgiaCérvico-Facial.
http://dx.doi.org/10.1016/j.bjorl.2016.10.005
Results:Therewasnoneedtochangethescaleafterthisstep.Basedontheprevioussteps, weobtainedthePortuguese(Brazil)versionoftheSSS,whichwascalled‘‘EscaladeVergonha eEstigma’’.
Conclusion:ThePortuguese(Brazil)versionoftheSSPwasshowntobeadequatetobeapplied tothepopulationwithHNCand, therefore,thepsychometricproperties ofthetoolwillbe evaluatedduringfollowingsteps.
© 2016 Associac¸˜ao Brasileira de Otorrinolaringologia e Cirurgia C´ervico-Facial. Published by Elsevier Editora Ltda. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).
PALAVRAS-CHAVE Qualidadedevida; Vergonha;
Estigmasocial; Neoplasiasdecabec¸a epescoc¸o
Traduc¸ãoeadaptac¸ãoculturaldaShameandStigmaScale(SSS)paraalíngua
portuguesa(Brasil)paraavaliac¸ãodepacientescomcâncerdecabec¸aepescoc¸o
Resumo
Introduc¸ão:Ocâncerdecabec¸aepescoc¸ocorrespondeàsextacausademorteporcâncerno mundo;seutratamentopodeenvolvercirurgia,quimioe/ouradioterapia,sendoqueacirurgia podeacarretar sequelasmutiladoras,podendo alteraraautoimagem dopaciente. Assim,o câncerdecabec¸a epescoc¸oémuitasvezes ligadoao estigma negativo,comdiminuic¸ãoda qualidadedevida.Poucosinstrumentosavaliamoestigmasocialeavergonhapercebidospor pacientescomcâncerdecabec¸aepescoc¸o.
Objetivo:Traduzir e adaptar culturalmente a Shame and Stigma Scale (SSS) para o por-tuguês/Brasil.
Método: Realizaram-seduas traduc¸ões independentes(doinglêspara o português)pordois profissionais fluentesna língua inglesa. Após a síntese das traduc¸ões, duas retrotraduc¸ões independentes(doportuguêsparaoinglês)foramrealizadaspordoistradutorescujalíngua maternaéoinglês.Todasastraduc¸õesforamanalisadascriticamenteporumcomitêde espe-cialistascompostoporcincomembros.Umaamostrade15pacientesrespondeuàversãoem português/BrasildaSSSpararealizac¸ãodopré-teste.Nestaetapa,ospacientespuderamsugerir modificac¸õeseavaliaroentendimentodositens.
Resultados: Nãohouvenecessidadedealterac¸ãodaescalaapósestafase.Apartirdasetapas anteriores,obteve-seaversãoemportuguês/BrasildaSSS,quefoidenominadadeEscalade VergonhaeEstigma.
Conclusão:Aversãoemportuguês/BrasildaSSSsemostrouaptaparaseraplicadanapopulac¸ão comcâncerdecabec¸aepescoc¸o;portanto,aspropriedadespsicométricasdoinstrumentoserão avaliadasnaetapaseguinte.
© 2016 Associac¸˜ao Brasileira de Otorrinolaringologia e Cirurgia C´ervico-Facial. Publicado por Elsevier Editora Ltda. Este ´e um artigo Open Access sob uma licenc¸a CC BY (http:// creativecommons.org/licenses/by/4.0/).
Introduction
Headand NeckCancer(HNC)corresponds toneoplasms in theanatomical-topographicregionoftheupper aerodiges-tivetract;amongthem, approximately90% aresquamous cellcarcinoma(SCC).1Ofthe580,000newcancercases
esti-matedinBrazilin2016,morethan15,000casesarelocated intheoral cavity, whereasmorethan7000 newcases are locatedinthelarynx.Thus,consideringthesetwolocations together,HNCoccupiesthesecondandninthplacesinterms ofincidenceamongmenandwomen,respectively.2
The mainrisk factorsassociatedwithHNC aresmoking andalcoholintake.Amongotherfactors,theHuman Papillo-mavirus(HPV)isdirectlyrelatedtooropharyngealtumors,3
whiletheEpstein---Barrvirusisassociatedwith nasopharyn-gealneoplasms.4Theincidencerateoftheseneoplasmshas
declinedincountrieswheresmokingalsodecreased.4
How-ever,5---30%ofpatientsdiagnosedwithHNCneversmoked.5
HNCisan aggressive,debilitatingcondition,associated with painand weight loss. The treatment can be carried outbysurgicaland/orradiationtherapy,systemictreatment withchemotherapyand/ornewchemotherapeuticdrugs.To definethetypeoftreatment,itismandatorytoassessthe tumorbiologicalcharacteristicsandperformacorrect clini-calstaging.Moreover,itisimportanttoassessthepatient’s clinical condition and critically discuss with patients the complications that treatment may entail. Whenever pos-sible, the patient should actively participate in shared decisionsonthedecision-makingoftheirtreatment.6
Theadverseeventscausedbychemotherapyand radio-therapy, in additiontothe potential mutilationsresulting from surgery, may negatively impact the quality of life reportedbypatients.7
ofsurgicalinterventionontheface,theself-imageimpact changes significantly, as the face is the main body part thatmakeseyecontactwithpeople.Physicalchangescause patients to define their body image through new experi-ences,changingtheirfeelingsandattitudes.Individualswho sufferedfacialmutilationshavetraumaticexperiencesthat maycauseanegativeimpactonqualityoflifeanddecrease self-esteem.8
Studies have shown a significant decrease in the qual-ity of life of cancer patients after treatment, especially regardingsocializationwithothersoutsidetheirusual con-tacts,orwithintheirownfamilies.Suchsocialinteractions can be affected by several factors, such as depression, shameduetovoicealterations,orshameduetoone’s phys-icalappearance.9,10
HNC andits treatment sequelae are mainly associated withthenegativestigmatarelatedtodeterioration,death and suffering. Thus, both patients and their families go through a readaptation process, mainly regarding body image.11 The stigma feelingcan be definedas a senseof
shame, the result of a large negative impact onphysical appearance, such as mutilation caused by surgical pro-cedures. Patients with these symptoms may experience depressionandsocialisolation.12
Therefore,itbecomesnecessarytoobjectivelyidentify how interventions related to treatment and the disease itself may interfere with the life of patients with HNC. Through a literature review, we found a tool that objec-tivelyevaluatesthesenseofshameandstigmareportedby thepatient.TheShame andStigmaScale(SSS) consistsof 20items,dividedintofourdomains.Eightitemsarerelated toshameandappearance,threearerelatedtosocial isola-tion,sixtothefeelingofstigmaandthreeitemstoregret. Responses aregraded ona Likert scale ranging from0 to 4,where 0correspondsto‘‘never’’;1to‘‘seldom’’; 2to ‘‘sometimes’’;3to‘‘often’’and4to‘‘allthetime’’.The SSS has been originally developed in English and demon-strated adequate psychometric properties in the original study.12
Theaimofthisstudywastoperformthetranslationand culturaladaptationoftheSSSscaleintothePortuguese lan-guagespokeninBrazil.
Methods
Studydesign
This studyis partofa largerproject,ofwhich the objec-tive is to validate the SSS to be applied in Brazil. In thisarticle, we willdescribe indetail thetranslation and adaptationsteps,whereastheevaluationofthe psychomet-ricproperties is still undergoing.This study is considered a methodological study, aimed to validate a health care assessmenttool.
Ethicalaspects
ThisstudywasapprovedbytheResearchEthicsCommittee of the hospital where the study wascarried out (Opinion N.914/2015).Allparticipantswereinvitedtoparticipatein thestudyandsignedthefreeandinformedconsentform.
Patientswithfunctionaland/orestheticsequelaefromthe treatmentofheadandnecktumors,aged18yearsandolder, whowere awareof the cancer diagnosis were invited to participateinthestudy.Patientswithneuropsychiatric dis-ordersthathinderedtheinterpretationofthescalesusedin thestudy,accordingtotheinvestigator’sassessment,were excluded.
Patientswere recruitedby convenience from the Den-tistryDepartmentofanOncologicalHospital.Allinterviews werecarriedoutbyasingleinterviewerinaprivateroom, whereonlythepatientandtheinterviewerwerepresent,to maintaintheconfidentialityofresponsesanddecreasethe patient’sinhibitionwhenansweringthequestionnaire.The interviewerdidnotparticipateinthepatients’treatment, beingresponsibleonlyfordatacollection.Fifteenpatients wereinvitedtoparticipateinthestudyandtherewereno refusals.
Translationandculturaladaptationprocess
TheSSSwassubmittedtothetranslationandcultural adap-tationprocessaccordingtoBeatonetal.13 Thetranslation
processtakesintoaccounttheperformanceoffivephases, whichcomprisetranslation,synthesisoftranslations, back-translation,committeeofexpertsandpretest.
--- Translation:performedbyatleasttwotranslators,whose native language is the one into which the toolwill be translated,andwhoarefluentintheoriginallanguageof thetool.
--- Synthesisoftranslations:carriedoutinpartnershipwith thetranslatorsandresearchersresponsibleforthestudy. Theaimofthisstepistofinalizeanewversionofthetool inthelanguageproposedforthestudy.
--- Backtranslation:reversetranslationbytranslatorsfluent in the languageinto which the toolis being translated andinthelanguageoftheoriginaltool.Forthisstep,the translatorsshouldnothavepriorknowledgeofthe orig-inaltool,sothatthetranslationprocessisnotinduced. Inthisstudy,theback-translatedversionswerecompared totheoriginaltoolthroughcollaborationwithoneofthe authorswhooriginallydevelopedthescale.
--- Committeeofexperts:itanalyzesallversionsaccording tosemantic-idiomatic,conceptualandcultural parame-tersofthelanguage,andfurtherconsolidatesapre-final version to beapplied on a smaller sample of patients. Ithastheautonomytomodify,maintainordeleteitems thatareambiguousorirrelevant.Inthisstudy,the com-mitteemembersusedscoresforallversionsofthescale, withscoresranging from1(notrepresentativeitem)to 4 (representative item). Forall items of the scale and theirrespectiveanswers,threecategorieswereassessed: semantic/idiomatic,conceptualandcultural.14 Basedon
these assessments, we calculated the Content Validity Index(CVI)consideringtheanswerswithscores3and4. Thus,theCVIofeachitemcorrespondstothesumofthe numberofresponses3and4,dividedbythetotal num-berofresponses.Fortheevaluateditemtobeconsidered appropriate,aminimumvalueof0.80wasaccepted.15
Shame and stigma scale english
-original
Synthesis of translation (V12)
Review by Committee of experts
Pre-final version
Pre-test
Pre-test
Committee of e
xper
ts
Bac
k tr
anslation
T
ra
nslation
SSS or
iginal
Final SSS version in portuguese (Brazil)
Translation1 (V1)
Backtranslation (B1)
Backtranslation (B2) Translation2
(V2)
Figure1 Flowchartofthetranslationandculturaladaptationprocess.
All ofthem wereasked about possible suggestionsthat couldimprovethescaleunderstanding.Additionally,the researcher responsible for applyingthe pre-test objec-tively assessed, according to his opinion, whether the patientsappropriatelyunderstandtheitemsandanswers.
Patients were also asked if any of the items seemed embarrassingtothem.
Table1 ItemsofthescalethathadCVIscores=0.80.
Item Phase Text CVI
Semantics/idiomatic Cultural Conceptual
Original Pleasecircleone(1)numberperline whichbestindicateshowwellthis statementappliedtoyouduringthe past7days.
--- ---
---Translation Porfavor,circuleum(1)númeropor linhaquemelhorindicaquãobema afirmac¸ãoseaplicouavocêdurante osúltimos7dias.
--- ---
---Committeeresult Porfavor,circuleum(1)númeropor linhaquemelhorindicaquãobema afirmac¸ãoseaplicouavocêdurante osúltimos7dias.
1.0 0.8 1.0
SSS-7 Original Ienjoygoingoutinpublic. --- ---
---Translation Eugostodesairempúblico. --- ---
---Committeeresult Eugostodesairnarua 1.0 0.8 1.0
SSS-14 Original Isensethatothersfeelstrainedwhen aroundme.
--- ---
---Translation Eusintoqueosoutrossesentem tensosquandoestãopertodemim
--- ---
---Committeeresult Eusintoqueosoutrossesentem tensosquandoestãopertodemim
1.0 0.8 1.0
SSS-17 Original IfeelsorryaboutthingsIhavedone inthepast
--- ---
---Translation Eumearrependodecoisasquefizno passado
--- ---
---Committeeresult Eumearrependodecoisasquefizno passado
0.8 0.8 0.8
AllotheritemsofthescaleshowedCVI=1.0(forallassessedcriteria).
Results
Translationandculturaladaptationprocess
Two bilingual translators (Portuguese-English), natives of Brazil,wereinvitedtotranslatetheSSSversionforthe trans-lation process from the English language into Portuguese (Brazil);thenewversionsof thescalewerecalled V1and V2. None of the translators had prior knowledge of the scale.BothversionsinPortuguesewereanalyzedbyagroup consisting of threeauthors of this study, which aimed to synthesizethetranslatedversionsintoanewversion(V12). Subsequently,theresultofthefirstversionofthescale inPortuguese(Brazil)wassubmittedtoback-translationinto EnglishbytwonativeEnglishspeakers,anAmericanandan Australiantranslator;bothwerefluentinPortuguese(these versionswerecalledB1andB2).
In this study, the Committee of Experts consisted of fivemembers:(1)ClinicalOncologist,withaPost-doctoral degreeinOncology,withmorethan10yearsofclinical expe-rienceinoncology,withpriorexperienceinthevalidation ofassessmenttools;(2)Nurse,withaPost-doctoraldegree inOncology,withmore15yearsofclinicalexperience,with priorexperienceinthe validationof assessmenttools; (3) DentalSurgeon,withaPh.D.inOncology,withmorethan10
yearsofclinicalexperienceinoncologyandpriorexperience inthe validationof assessment tools; (4) Dental Surgeon, SpecialistinOncology,with5yearsofclinical experience; (5),aprofessionaltranslator,witha degreein Portuguese LanguageandLiterature,withpriorexperienceinthe vali-dationofassessmenttools.
Regarding the CVI, all items showed adequate results (CVI≥0.8).Ofalltheassesseditems,sixlanguage param-etersin fourof thescale items, had ascore of 0.80;the remainderwereequalto1.0.Table1showsthefouritems thatobtainedCVI=0.80.
Oneofthestudyauthors,whooriginallydevelopedthe scale, evaluatedthe back-translated versions and consid-eredtheprocessappropriate.Moreover,hewasavailableto helpthroughouttheentiretranslationprocess.
Pretest
Table2 ResultsoftheSSSunderstandingbypatientsinterviewedduringthepre-testphase.
Variable Category n %
Patientassessment
Patientunderstoodtheentirescale Yes 13 86.6
No 2 13.4
Itemthatpatientdidnotunderstand SSS-14 1 6.7
Suggestionforchangebythepatient Yes 1 6.7
No 14 93.3
Suggestedchange Replacetheword‘‘Cancer’’by‘‘Treatment’’ 1 6.7
Researcher’sassessment
Patientunderstoodtheentirescale Yes 14 93.3
No 1 6.7
Itemthatpatientdidnotunderstand UnderstandingoftheLikert-typescale 1 6.7
The mean age of patients was63.2 years (SD=15.37); 8(53.3%) weremales; 12(80.1%) patientshad low family incomeand9(60%)hadnotfinishedelementaryschool,i.e., hadlowlevelofschooling.
Patientsweregiventheoptiontoeitherself-administer the tool or to have it applied by the interviewer. Only 1
(6.7%) chosetoself-administer it.In all other interviews, theSSSwasappliedbytheinterviewer.
All patients answered a questionnaire with questions related to the understanding of each SSS item and their respectiveanswers.Table2showstheresultsaboutthescale understanding and the changes suggested by the patients
Table3 ShameandStigmaScale(SSS)inPortuguese(Brazil),finalversion-20items.Findbelowalistofstatements.Please
circleone(1)numberperlinewhichbestindicateshowwellthisstatementappliedtoyouduringthepast7days.
Nunca Raramente Às
vezes
Frequentemente OTempo todo
1.Eugostodaminhaaparência 0 1 2 3 4
2.Euevitomeolharnoespelho 0 1 2 3 4
3.Eutenhovergonhadaminhaaparência 0 1 2 3 4
4.Euestoufelizcomaaparênciadomeurostooudo meupescoc¸o
0 1 2 3 4
5.Eusintoqueaspessoasficammeencarando 0 1 2 3 4
6.Euevitoencontrarpessoasporcausadaminha aparência
0 1 2 3 4
7.Eugostodesairnarua 0 1 2 3 4
8.Eumesintoangustiadopelasmudanc¸asemmeu rostooupescoc¸o
0 1 2 3 4
9.Eusintoqueosoutrosmeconsideramresponsável pelomeucâncer
0 1 2 3 4
10.Eusintovergonhaquandoeucontomeu diagnósticoparaaspessoas
0 1 2 3 4
11.Eusintovergonhaporterdesenvolvidoocâncer 0 1 2 3 4
12.Aspessoasmeevitamporcausadomeucâncer 0 1 2 3 4
13.Eusintovontadedemantermeucâncerem segredo
0 1 2 3 4
14.Eusintoqueosoutrossesentemtensosquando estãopertodemim
0 1 2 3 4
15.Eutenhoumfortesentimentodearrependimento 0 1 2 3 4
16.Eufariamuitascoisasdiferentesseeutivesse umasegundachance
0 1 2 3 4
17.Eumearrependodecoisasquefiznopassado 0 1 2 3 4
18.Eusintovergonhadamudanc¸aemminhavoz 0 1 2 3 4
19.Euevitofalarcomasoutraspessoas 0 1 2 3 4
interviewedinthepretest.Theonlysuggestionforchange (replacingthe word‘‘cancer’’ by‘‘treatment’’) (Table 2) wassent tothe committee of experts whodecidedthere wasnoneedtomakethechange,keepingtheitemsinthe originalform.
From the translation process to the pre-test, the SSS remained similarto the original scale. Table 3 shows the translated and culturally adapted version of scale in the Portugueselanguage(Brazil).
Discussion
The presentstudy carriedoutthetranslation andcultural adaptationintoPortuguese(Brazil)oftheSSS. Throughout all the study phases, we used a consolidated systematic methodology and internationally accepted norm for the effectivenessoftheprocessoftranslationandcultural adap-tation of health assessment tools. This stepis one of the mostimportantinthevalidationprocessandmustbevery carefullyperformed sothatfuturestudiestoevaluatethe psychometricpropertiescanconfirmthescalevalidity.13,16
Ideally, we seek tovalidate existingtools, so that the developmentofanewoneisnotnecessary.Thevalidation ofanexistingtoolhelpstousethesamedatapatternin dif-ferentpopulations,when carryingout furtherstudies and internationalcomparisons.Thisprocessalsosavestimeand money,whencomparedtothecomplexprocessof develop-ingnewtools.14
Afterthetranslationsareperformed,itisimportantthat thetoolbesent tothecommittee ofexperts, sothefirst phaseofculturaladaptationcanbecarriedout,beforeitis submittedtothepretest.Thisstep,whichhasbeen some-timesneglected,assistsinthewaythepatientunderstands andanswersthetoolquestions.13,16
Asexpected,theBrazilianpopulationstillhasproblems regarding education.Therefore,considering that the hos-pitalwherethestudywasperformedisareferencecenter inpubliconcologicalcareinBrazil,weidentifiedasample inthepretest withlowlevel ofeducation.Inastudy per-formedinSãoPaulo,from2000to2006,morethan40%of patientswithHNCwereilliterateorhadnotfinished Elemen-tarySchool.17Forthisreason,itisimportantforassessment
scalestobeconciseandwell-understoodbyresponders. The SSS has 20 items comprising short statements, which can be self-applied or applied by the interviewer. All patients were asked about their preferences for the scaleresponsemethod(appliedbytheintervieweror self-applied).Althoughthe originalscale wasdeveloped tobe self-applied,onlyonepatientchosetodoitso,whereasall theother14chosetohavethescaleappliedbythe inter-viewer.Althoughthismaybeconsideredastudylimitation, theauthorsbelievethattheinclusiononlyofpatientsable toappropriatelyanswerthescalewhenitwasself-applied would not represent the population being studied (which oftenhaslow levelof schooling).Interestingly,aprevious Brazilianstudyfoundthat77%ofpatientspreferthathealth assessmenttoolsbeappliedbyaninterviewer.18
Thisstudywaspromptedbythescarcityoftoolstoassess bodyself-imageofpatientswithHNC,andespeciallytools alreadyvalidated for thePortuguese language.Tools such astheQualityoflife-HeadandNeckCancerModuleEORTC
H&N35,FACT-HN andUniversityofWashingtonUWQOL are available for use in the Portuguese language, but none of them include specific items related to shame and/or stigma.
Conclusion
ThePortugueseversionoftheSSSwasconsideredadequate andculturallyadaptedforuseinBrazil.Therefore,thetool canbeappliedtotheassessmentofitspsychometric prop-ertiesinthefuture.
Conflicts
of
interest
Theauthorsdeclarenoconflictsofinterest.
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