www.bjorl.org
Brazilian
Journal
of
OTORHINOLARYNGOLOGY
ORIGINAL
ARTICLE
Quality
of
life
impairment
in
patients
with
head
and
neck
cancer
and
their
caregivers:
a
comparative
study
夽
Laís
Rigoni
a,∗,
Raphaella
Falco
Bruhn
b,
Rafael
De
Cicco
b,
Jossi
Ledo
Kanda
b,
Leandro
Luongo
Matos
caFaculdadedeMedicinadoABC,SantoAndré,SP,Brazil
bFaculdadedeMedicinadoABC,DisciplinadeCirurgiadeCabec¸aePescoc¸o,SantoAndré,SP,Brazil
cFaculdadedeMedicinadoABC,DisciplinadeSaúdeColetiva(CursodeBioestatística),SantoAndré,SP,Brazil
Received4November2015;accepted8December2015 Availableonline11April2016
KEYWORDS
Squamouscell carcinoma; Qualityoflife; Caregivers;
Headandneckcancer
Abstract
Introduction:Headandneckcancerrepresents3%ofallthetypesofmalignantneoplasmsand squamouscellcarcinoma(SCC)isresponsiblefor 90%ofthesecases.Therehavebeensome studiesevaluatingthequalityoflifeofthesepatients,butlittleisknownaboutthephysical andemotionaleffectsontheircaregivers.
Objective:Toevaluate the quality oflifeofpatients with headand neckcancerand their caregiversbyapplyingvalidatedquestionnaires.
Methods:Thirtypatientswithadvancedtumors(SCCstageIIIorIV)andtheir30caregiverswere included.Specificquestionnaires(Coop/Wonca,EORTCQLQ---C30,EORTCH&N35,Coop/Wonca, andCaregiverStrainIndex---CSI)wereappliedduringroutinemedicalconsultations.
Results:Of the30 patients, 28were males and25 hadstage IVtumors, withmean ageof 56.6years.36.7%hadtheprimarytumorintheoropharynxand70%reportedpain.The func-tionalcognitive,physical,andemotionalscaleswerethemostaffected.Pain,fatigue,andsleep disorderswerethemostprevalentsymptoms.Ofthe30caregivers,23werefemalesand70% weretheprimarycaregivers.36.7%ofthecaregivershadhighlevelsofstress,mainlyrelatedto thefeelingofincapacity.Thecomparisonbetweenpatientsandcaregiversdemonstratedthat thetwogroupshadsimilarqualityoflifeimpairment:physicalfitness(p=0.487),mentalhealth (p=0.615),dailyactivities(p=0.793),socialactivities(p=0.301),changesinhealth(p=0.649), andoverallhealth(p=0.168).
夽 Pleasecitethisarticleas:RigoniL,BruhnRF,DeCiccoR,KandaJL,MatosLL.Qualityoflifeimpairmentinpatientswithheadandneck cancerandtheircaregivers:acomparativestudy.BrazJOtorhinolaryngol.2016;82:680---6.
∗Correspondingauthor.
E-mail:lais.med44@hotmail.com(L.Rigoni).
http://dx.doi.org/10.1016/j.bjorl.2015.12.012
Conclusion: Qualityoflifeimpairmentissimilarbetweenpatientsandtheir caregivers.This resultdemonstratesthatnotonlythepatientsshowqualityoflifeimpairment,buttheir care-giversalsohaveitandatsimilarproportions.
© 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
Carcinoma espinocelular; Qualidadedevida; Cuidadores; Câncerdecabec¸a epescoc¸o
Comprometimentonaqualidadedevidadepacientescomcâncerdecabec¸a epescoc¸oedeseuscuidadores:estudocomparativo
Resumo
Introduc¸ão: Ocâncerdecabec¸aepescoc¸orepresenta3%detodosostiposdeneoplasias malig-naseocarcinomaespinocelularcorrespondea90%doscasos.Háestudossobreaqualidade devidadessespacientes,maspoucoseconhecesobreosprejuízosfísicoeemocionaldosseus cuidadores.
Objetivo: Avaliaraqualidadedevidadepacientescomcâncerdecabec¸aepescoc¸oe compar-ativamentedeseuscuidadoresapartirdaaplicac¸ãodequestionáriosvalidados.
Método: A casuística foi constituída de 30 pacientes com tumores avanc¸ados (carcinomas espinocelularesdeestádioIIIouIV)decabec¸aepescoc¸oe30cuidadores.Foramaplicados ques-tionáriosespecíficos(Coop/Wonca,EORTCQLQ---C30,EORTCH&N35,Coop/WoncaeCaregiver StrainIndex---CSI)apartirdevisitasderotinaaoambulatório.
Resultados: Dos30pacientes,28eramdosexomasculinoe25apresentavamestádioIV,com idademédiade56,6anos.36,7%tinhamotumorprimárionaorofaringee70%sentiamdor.As escalasfuncionaiscognitivas,físicaeemocionalforamasmaisafetadas.Dor,fadigaedistúrbio dosonoforamossintomasmaisprevalentes.Dos30cuidadores,23eramdosexofemininoe70% eramcuidadoresprimários.36,7%doscuidadoresapresentaramaltoníveldeestresse, princi-palmenterelacionadoàsensac¸ãodeincapacidade.Acomparac¸ãoentrepacientesecuidadores demonstramque osdoisgrupos apresentamsemelhantecomprometimentodaqualidadede vida:aptidãofísica(p=0,487),saúdemental(p=0,615),atividadesdiárias(p=0,793), ativi-dadessociais(p=0,301),mudanc¸anasaúde(p=0,649),saúdegeral(p=0,168).
Conclusão:O comprometimentonaqualidade devidaé semelhanteentre pacienteseseus cuidadores,ouseja,nãosóosindivíduosdefatodoentesapresentamprejuízonasuaqualidade devida,masosseuscuidadorestambémenamesmaproporc¸ão.
© 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
Head and neck cancer accounts for 3% of all types of malignant neoplasms, andsquamous cellcarcinoma (SCC) represents90% of the histologicalsubtypes of these neo-plasms.Theincidenceofthediseasehasincreasedinrecent years,and thistypeof tumor is alsoassociatedwithhigh ratesofrecurrenceandmortality.Treatmentdependsonthe primarytumorsiteandsurgeryplaysakeyroleinthecureof thesepatients.Moreover,treatmentoftenleadsto perma-nentfunctionalandestheticsequelaeinthesepatients.1,2
Manystudieshaveshownimpairmentrelatedtofeeding, nutrition,andpainaspectsand,toagreatextent, psycho-logicalproblemsinpatientswithheadandneckcancer;the latteriscommonnotonlyduringthediagnosisandtreatment butalsoformanysubsequentyears.3
However,littleisstudiedregardingtheircaregivers’ qual-ity of life; these are usually family members who often sacrificetheirowncareersorworktodedicatethemselves
exclusivelytothepatient’scare.Thefamilyalsohasphysical andemotionalneeds,inadditiontotheneedforinformation aboutpatientcare.4
Objectives
Thisstudy aimstoevaluate thequalityof lifeof patients withheadandneckcancerandcomparatively,oftheir care-givers,basedontheapplicationofvalidatedquestionnaires.
Methods
number447488-11,andafreeandinformedconsentform wassignedbyallthestudysubjects.
Patients withhead and neck squamous cell carcinoma stages III and IV, receiving the first treatment or with recurrence,and theirinformalcaregivers, i.e.,thosewho were not healthcare professionals, were included in the study.Exclusioncriteriawere:presenceofformalcaregiver (healthcare professionals); patients incapable of verbal and/orwrittencommunication,orthosewhorefusedtosign theinformedconsent;independentpatients,i.e.,thosewho didnotrequirespecificcarefromcaregivers(assessedbya zeroscoreinthe‘‘activitiesofdailyliving’’(ADL) question-naire,describedbelow);andpatientorcaregiverwhowas unawareofthemalignancydiagnosis.
Theinformalcareisstructuredaccordingtothedegree ofinvolvementofthecaregiverinthistask.Thus,the care-givers were further classified into three groups. Primary caregivers are primarily responsible for the patient and perform most of the tasks, such as feeding, medication, and hygiene. Secondary caregivers generally do not have the same level of responsibility as the primarycaregiver, but help in some tasks, provide domestic help, and take turnswiththeprimarycaregivers.Asfortertiarycaregivers, althoughnotdirectlyinvolvedinthecare,theyhelpother caregiversperformingsimpletasks,suchaspayingbillsand doingshopping.5
Usedquestionnaires
After identification card was filled out and the free and informedconsentformwassignedbyboththepatientand the caregiver, demographicdata were collected andfour questionnaireswereapplied:threetotheselectedpatients (AVD,Coop/Wonca,andEORTC)andtwototheircaregivers (Coop/WoncaandCaregiversStrainIndex---CSI).Thecontent ofthesequestionnairesaimedtoevaluateaspectssuchas theoverall,physical,financial,andemotionalwell-being.
Thesequestionnaireswereappliedatoncewithouta pre-establishedorderinaseparateroomoftheoutpatientclinic, andthepatientsandtheircaregiverswereindividually sur-veyed.Thetotaltimeoftheexplanationregardingthestudy objectives,signingoftheinformedconsent,and question-naireapplicationlastedonaverage30min.
The questionnaires usedfor quality of life assessment werethefollowing:
(a) Activities of Daily Living (ADL)6,7: Used to exclude patientswhowerecompletelyindependentfromtheir caregivers (scoreof zero shows that thepatient does notrequiresupportivecare);
(b) Coop/Wonca8,9: This questionnaire aims to produce a practical and fast tool, with a generic coverage regardingthe individual’s well-beingand it isused to classify the patient’s quality of life in the last two weeks.Theindividualisaskedtoclassifyhis/her activ-ities in the last two weeks. Altogether there are six itemsrelatedtophysical fitness,feelings, daily activ-ities,sociallife,changes inhealth status,andoverall healthstatus.Additionally,theclassificationscalesare illustrated withpictogramsthat expressthe following modalities,ingeneral:excellent,verygood,good,poor,
andbad.Thequestionnaireiseasilyunderstoodandwell acceptedbyrespondents.Inaddition,ithasbeenwidely used in general practice.Responses to the individual questionnaireitemswereclassifiedfrom1to5,where 1 isthe bestand5the worststatus,and theanswers wereaddedattheend;
(c) Caregiver Strain Index (CSI)10: This questionnaire was specifically designed to assess the quality of life of informalcaregivers. The CSIassesses13 items consid-ered ‘‘stressful’’: inconvenience, confinement,family adjustment, change inpersonal plans, increasedtime demand, inconvenience regarding the behavior, per-sonality change, adjustment at work, feeling of not knowinghowtohandlethesituation,financialpressure, sleepdisorders,andphysicalpressure.Thesefactorsare addressedas‘‘yes-’’or‘‘no-’’questions.Itisbelieved thattheCSIcanbeusefulinpreventiveclinicalpractice or topreparethecaregivers, whenusingit topredict risk for a specific caregiver population. One point is attributedtoeach‘‘yes’’answer,uptoamaximumfinal scoreof 13points,andthe higherthefinalscore,the higherthestresslevelofthecaregiver,andvalueshigher thansixpointsareequivalentto‘‘highlevelofstress’’; (d) EORTCQLQ-C30QualityofLifeIndex(Version3.0)11:this is a quality of life questionnaire that hasbeen inter-nationally validated and translated into Portuguese, created by the European Organization for Research andTreatment ofCancer(EORTC),consisting ofthirty questions,regardingtheprevious week,for whichthe patient must circulate numbers that represent the severity of the statements about daily activities and symptoms duringthat period.The H&N35Appendix is specifically designed for patients with head and neck cancer,itssymptoms,treatment,andspecificqualityof life.Thequantificationofthesequestionnairesfollowed theirownguidelinesandthefinalscoreswereexpressed aspercentages.
Statisticalanalysis
Distributions were defined as non-parametric by the Kolmogorov---Smirnovtest.Thevaluesobtainedinthestudy ofeachquantitativevariablewereorganizedandexpressed asmeansandstandarddeviationsormediansand interquar-tile ranges (difference between percentiles 75 and 25). Absolute and relative frequencies were used for qual-itative variables. The comparison between quantitative variables and two sample populations was performed by Mann---Whitney test. The statistical program SPSS version 17.0(SPSSInc.;Illinois,UnitedStates)wasusedinall anal-ysesandthestatisticalsignificancewassetatp<0.05.
Results
Table1 Descriptivedataofpatientsandtheircaregiversincludedinthestudy(n=30ineachgroup).
Patients Caregivers
Variables Results Variables Results
Gender Gender
Female 2(6.7%) Female 23(76.7%)
Male 28(93.3%) Male 7(23.3%)
Age(mean) 56.6years Age(mean) 45.4years
Levelofschooling Levelofschooling
Illiterate 1(3.3%) Illiterate 1(3.3%)
Didnotfinishelementaryschool 15(50%) Didnotfinishelementaryschool 6(20%) Finishedelementaryschool 6(20%) Finishedelementaryschool 10(33.3%) Didnotfinishhighschool 3(10%) Didnotfinishhighschool 1(3.3%) Finishedhighschool 3(10%) Finishedhighschool 8(26.7%) College/university 2(6.6%) College/university 4(13.3%)
Maritalstatus Maritalstatus
Single 6(20%) Single 8(26.7%)
Married 18(60%) Married 17(56.7%)
Divorced 3(10%) Divorced 2(6.6%)
Widowed 3(10%) Widowed 3(10%)
Otherclinicalcharacteristics Kinship
Undergoingchemotherapy 5(16.7%) Partner 9(30%)
Enteraldiet 16(53.3%) Ex-partner 1(3.3%)
Tracheostomy 12(40%) Sibling 9(30%)
Pain 21(70%) Child 10(33.3%)
Mother 1(3.3%)
Primarytumorsite Monthlyincome
Nasopharynx 1(3.3%) Upto1minimumwage 11(36.7%)
Oralcavity 5(16.7%) 1---5minimumwages 17(56.7%)
Oropharynx 11(36.7%) 5---10minimumwage 2(6.7%)
Larynx 10(33.3%) Caregiver’sdegree
Hypopharynx 3(10%) Primary 21(70%)
Secondary 8(26.7%)
usingenteralnutritionand12hadtracheostomyatthetime of the interviews.Most reportedfeelingchronic pain and usedseveralanalgesics.
In addition to the 30 patients, their 30 corresponding caregiverswereinterviewed.Mostcaregiverswerewomen, most of whom had a close relationship with the patient, whetherspouse, child,or sibling.The caregivers’ levelof educationwasalittlebetterthanthatofpatientsandthe monthlyincomewasapproximately1---5minimumwagesfor mostoftherespondents.Twenty-oneindividualswere con-sideredprimarycaregivers.Thedetaileddescriptivedataof patientsandtheircaregiversareshowninTable1.
The EORTCQLQ-C30QualityofLifeIndexquestionnaire showed that the cognitive, physical, and emotional func-tionalscaleswerethemostaffectedinthepatients.Pain, fatigue,andsleepdisorders(mainlyinsomnia)werethemost prevalent symptoms. In addition, most patients reported financialdifficultiesduringthetreatmentperiod.TheEORTC QLQ-C30dataaredetailedinTable2.
The EORTCquestionnaireH&N35Appendixshowedthat mostpatientsreportedpain,abilitytodetectproblems, dif-ficultyinsocialcontact,useofanalgesics,andweightloss
asthemajorfactorsforloss ofqualityoflife.The EORTC H&N35dataaredescribedinTable3.
The Coop/Wonca questionnaire showed that most patientshadpoorphysicalfitness,moderatementalhealth deterioration, little difficulty in performing activities of dailyliving,andmoderatelyimpairedsocialactivities. Addi-tionally,mostpatientsclassifiedtheiroverallhealthstatus asgood,andlittleimprovementwasobservedwhenthe gen-eralstatusonthedayoftheinterviewwascomparedwith the one twoweeks before the interview. Most caregivers showedmoderatephysicalfitness,whiletheimpacton men-talhealth washigh.Caregiversalsohad littledifficultyin performingactivitiesofdailylivingandsocialactivities.In general,caregiversconsideredtheirgeneralhealthstatusas goodandreportedthesamehealthstatusonthedayofthe interviewandtwoweeksbeforethedayoftheinterview.
Table2 BasalvaluesofEORTC---C30questionnaireforpatients.
BasalvaluesofEORTC---C30 Median Mean±standarddeviationa
Functionalscales
Physicalfunction 70.00 66.00±23.58
Overallfunction 58.33 56.67±37.55
Emotionalfunction 62.50 59.17±27.01
Cognitivefunction 83.33 78.89±19.54
Socialfunction 50.00 59.44±32.37
Overallhealth 58.33 54.17±24.93
Symptomscales
Pain 41.67 41.67±36.03
Nauseaandvomiting 0.00 3.33±8.07
Fatigue 33.33 37.41±29.25
Isolatedvariables
Dyspnea 0.00 18.89±29.92
Sleepdisorder 33.33 42.22±34.94
Lossofappetite 16.67 34.44±41.51
Constipation 0.00 23.33±31.74
Diarrhea 0.00 10.00±23.41
Financialdifficulties 66.67 61.11±34.00
aValuesinpercentages.
theircaregivers.Thus,notonlythepatientsshowedquality oflifeimpairmentbutalsotheircaregivers,andatthesame proportion.ThesedataareshowninTable4.
TheCSI questionnairealsoshowedthat36.67%of care-givershadhighlevelsofstress,mainlyrelatedtofeelingsof incapacity,changesinpersonalplans,andsleepdisorders, asshowninTable5.
Discussion
Basedontheapplicationoftheidentificationandqualityof lifequestionnairesduringtheinterviews,thestudyshowed thatthequalityoflifeofbothpatientswithheadandneck cancerand theircaregivers showedqualityof life impair-ment,withnosignificantdifferences betweenthegroups. Thismeansthatcaregivershaveadecreaseintheirquality oflifethatisproportionaltothepatients’,demonstrating thatthediseaseaffectsnotonlypatientsbutalsothepeople aroundthem.Currently,therearefewstudiesthataddress thequalityoflifeof caregiversof patientswithheadand neckcancerandthereareevenfewercomparativestudies betweenthetwogroups.
Patientscomplainofpain,fatigue,andsleepdisordersas majorfactorsaffectingtheirqualityoflife,whilecaregivers haveahighlevelofstressrelatedtothefeelingofinability tohelpthepatientwithouttheadequatemeanstodoso.
Regarding the descriptive characteristics of caregivers found in the literature, studies indicate that caregivers werepredominantlyfemaleandthepatient’sspouse.Inthe presentstudy,76.7%ofcaregiverswerewomenandonly30% weremarried to thepatient. This fact mayinfluence the studyresult,becausethewives’affectiverelationshipmake themmoresusceptibletoemotionaladjustment.12However, manystudiesclaimthatthecaregiver’sgenderisnot signifi-cantlyassociatedwithpsychological health.13,14 Moreover,
Table3 BasalvaluesofEORTCQLQ---H&N35questionnaire forpatients.
Variables---EORTCQLQ---H&N35 Results(%)a
Pain 66.11±28.70
Difficultyinswallowing 50.28±31.67 Abilitytodetectproblems 68.33±31.67
Speechdisorders 58.15±29.13
Feedingproblems 50.83±32.49
Problemswithsocialcontact 66.17±29.97
Sexualinterest 56.67±40.97
Dentition 23.33±34.07
Mouthopeningcapacity 42.22±41.00
Xerostomia 38.89±39.23
Thicksaliva 35.56±36.02
Coughing 41.11±33.54
Emotionalstatus 31.11±41.00
Useofanalgesics 70.00±46.61
Nutritionalsupplements 50.00±50.85
Enteraldiet 46.67±50.74
Weightgain 13.33±34.57
Weightloss 60.00±49.83
aMean±standarddeviation.
Ross et al.13 found no definitive association between the caregivers’educationallevelandtheirqualityoflife,which corroboratestheresultsofthepresentstudy,asneitherthe educationallevel,northesocialclassinterferedwiththese individuals’qualitylifeandemotions.
Table4 ComparisonofthedomainsoftheCoop/Woncaquestionnairebetweenpatientswithheadandneckcancerandtheir caregivers.
Coop/Woncabasalvalues Patienta Caregivera pa
Physicalfitness 4(3.00---4.00) 3(2.25---4.00) 0.487
Mentalhealth 3.5(2.00---5.00) 4(3.00---5.00) 0.615
Dailyactivities 2(1.25---4.00) 2(1.00---3.00) 0.793
Socialactivities 3(1.00---4.00) 2(1.00---3.00) 0.301
Changesinhealth 2(2.00---3.00) 3(2.00---3.75) 0.649
Overallhealth 3.5(3.00---4.00) 3(3.00---4.00) 0.168
aMedian(interquartilerange).
Table5 CaregiverStrainIndex(CSI)questionnaireapplied tocaregivers.
Variables---CSI Results
Inconvenience 10%
Confining 20%
Familyadjustments 40% Changesinpersonal
plans
66.7%
Increaseinthedemand fortime
50%
Inconvenienceregarding thebehavior
36.7%
Changeinpersonality 46.7% Workadjustments 46.7% Feelingcompletely
overwhelmed
93.3%
Financialstrain 46.7% Sleepdisorders 66.7% Physicalstrain 40%
Suma 5.67±2.89(36.7%≥7)
aMean±standarddeviation.
developmentof diseasesprimarilyrelatedtostress. More-over,caregiverswithanxietysymptomsasaresultofstress havegreaterdifficultyinunderstandingthepatient’sneeds, suchastheadministrationofmedications,15whichmay neg-atively impact the patient’s treatment. Similarly, Vickery etal.16showedthatcaregivershavemorepsychological dis-orderscomparedtopatientswithheadandneckcancer.
Studies suggest that a significant number (20---38%) of caregivers have emotional impairment.13,14 Similarly, caregivers have worse mental health (e.g., high levels of depression and anxiety symptoms) than the general population16,17andalsocomparedtothepatientswithhead and neck cancer.16,18 The literature also shows that the lifestyle changes imposed on these caregivers negatively affecttheir qualityof lifeandsignificantlyincreasestress levels,12afactalsoobservedinthisstudy.
The present study has some limitations, as the data obtained from the questionnaires do not clarify the dif-ferencebetweenthewell-beingofthetwoassessedstudy groupsinthelongterm.Studieshaveshownthattheperiod more susceptibleto stress for caregivers of patients with headandneckcanceroccursduringthefirstsixmonthsof treatment;however,therearenoprospectiveand longitudi-nalstudiesevaluatingthisissue.19Additionally,althoughthe
Coop/Woncaquestionnaireshowschangesinthesame direc-tionastheQLQ-C30questionnaire,thistoolisnotsensitive enoughtodetectthe subtledifferencesthattheQLQ-C30 mightdisclose.3
Conclusions
Throughtheanalyzeddata,itcanbeconcludedthat qual-ityof lifeis similarly affectedin both patients withhead andneckcancerandtheircaregivers.Notonlypatientsbut alsotheircaregiversshouldbeevaluatedforqualityoflife impairmentand,ifnecessary, theyshouldbereferred for specializedcare.
Funding
Fundac¸ão de Amparo à Pesquisa do Estado de São Paulo (FAPESP).
Conflicts
of
interest
Theauthorsdeclarenoconflictsofinterest.
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