Quality of life and pain multidimensional aspects in individuals with HTLV-1

w w w . e l s e v ie r . c o m / l o c a t e / b j i d

The

Brazilian

Journal

of

INFECTIOUS

DISEASES

Brief

communication

Quality

of

life

and

pain

multidimensional

aspects

in

individuals

with

HTLV-1

Maíra

Carvalho

Macêdo

,

Renata

de

Sousa

Mota

,

Naiane

Araújo

Patrício

,

Ana

Paula

Campos

dos

Santos

_,

_Selena

_Márcia

_Dubois

_Mendes

_,

Cristiane

Maria

Carvalho

Costa

Dias

_,

_Abrahão

_Fontes

_Baptista

_,

_Katia

_Nunes

_Sá

a_{EscolaBahianadeMedicinaeSaúdePública,ProgramadePós-Graduac¸ãoemMedicinaeSaúdeHumana,Salvador,BA,Brazil}

b_{EscolaBahianadeMedicinaeSaúdePública,ProgramadePós-Graduac¸ãoemTecnologiasdaSaúde,Salvador,BA,Brazil}

c_{EscolaBahianadeMedicinaeSaúdePública,Salvador,BA,Brazil}

d_{UniversidadeFederaldaBahia,FaculdadedeMedicinadaBahia,ProgramadePós-Graduac¸ãoemMedicinaeSaúde,Salvador,BA,Brazil}

e_{UniversidadeFederaldaBahia,Salvador,BA,Brazil}

f_{UniversidadeCatólicadeSalvador,Salvador,BA,Brazil}

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Articlehistory:

Received9January2016 Accepted27May2016 Availableonline26July2016

Keywords:

Pain Qualityoflife HTLV-1

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HTLV-1createsachronichealthconditionthatinvolvesmoderatetoseverepainwitha neg-ativeimpactonqualityoflife(QoL).Thereisnoconsensusonwhichattitudestopainare morerelatedtotheworseningofQoLinHTLV-1infectedpatients.Theaimofthisstudywas toinvestigatethecorrelationbetweenQoLandmultidimensionalaspectsofpaininpatients withHTLV-1.Across-sectionalstudywasconductedinSalvador,Bahia,Brazil.Thestudy includedindividualsdiagnosedwithHTLV-1.TheShortForm36Questionnairewasused toanalyzeQoL,andtheBriefPainInventorywasusedtoassessmultidimensionalaspects ofpain.Themeanpainintensitywas4.88±3.06onthevisualpainscale,andtheaverage impactonQoLcorrespondedtoalossofapproximately40%.Moderatetohighcorrelations betweenpainintensityandalldomainsofQoLwereobservedandcomparedreaction atti-tudesforgeneralactivity,mood,abilitytowalk,abilitytowork,relationships,sleep,and abilitytoenjoylife(r>0.40;p<0.05).Moderatecorrelationswerefoundbetweenalldomains ofQoL,painintensity,andreactiveattitudestopain.Thegreatestpainintensityimpacts involveddifficultytowalkandtowork,andinterpersonalrelationshipsintheemotional aspectofQoL.

©2016SociedadeBrasileiradeInfectologia.PublishedbyElsevierEditoraLtda.Thisisan openaccessarticleundertheCCBY-NC-NDlicense(http://creativecommons.org/licenses/ by-nc-nd/4.0/).

The Human T-cell Lymphotropic Virus Type 1 (HTLV-1) is a retrovirus endemicin several regions ofthe world.1–3 _In Brazil,itsprevalenceishigherinSalvadorcity,corresponding

∗ _{Correspondingauthor.}

E-mailaddress:[email protected](M.C.Macêdo).

to 1.76% of the population.4 _{Only 5% of patients with} HTLV-1developsymptomsassociatedwithsuchretroviruses. It frequently manifests with spasticity, gait disturbances,

http://dx.doi.org/10.1016/j.bjid.2016.05.010

1413-8670/©2016SociedadeBrasileiradeInfectologia.PublishedbyElsevierEditoraLtda.ThisisanopenaccessarticleundertheCC BY-NC-NDlicense(http://creativecommons.org/licenses/by-nc-nd/4.0/).

brazj infect dis.2016;20(5):494–498

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weaknessandstiffnessofthelowerlimbs,impaireddynamic balance,andpain.5,6

InSalvador,84.3%ofinfectedindividualsexperiencepain, whichismorethantwicetheprevalenceinthegeneral popula-tion(41.4%).7,8_{Thepainintheseindividualsmainlyaffectsthe} lowerbackandlegs,worsenswithlongperiodsinoneposition andphysicaleffort,andpresentsdaily.Thepain,lackof blad-dercontrol,andchangesingaitpatternsleadtolimitations thathaveahighimpactonactivitiesofdailyliving(ADLs), contributingtoareducedqualityoflife(QoL).9,10

BecauseHTLV-1isaneglected healthcondition, aspects suchastheimpactontheQoLofinfectedindividuals have beenpoorlyexplored,especiallyusingspecifictoolsfor delin-eationofmultidimensionalaspectsofpainandassessmentof differentdomainsofQoL.StudiesonQoLcanguideeducation andhealthpromotionprogramsfocusingonself-careandthe functionalindependenceofindividualsaffectedbyHTLV-1.11 Astheimpactofdifferentsensoryandreactive character-isticsofpainonQoLofinfectedindividualsremainunclear, thisstudyaimedtocorrelatethemultidimensionalaspectsof painandlevelsofQoLforindividualswithHTLV-1.

Across-sectional observational study was conducted in the Advanced Physical Therapy Clinic(CAFis) ofthe Bahia Schoolof Medicineand Public Health (EBMSP)in Salvador, Bahia,Brazil.Thestudy includedmenandwomenaged18 andolderwhowerediagnosedwithHTLV-1accordingto crite-riadefined bythe World Health Organization, classified as definedandprobableforHAM/TSP,andabletoremainupright withoutsupport.Patientsadditionaldisorderssuchas arthri-tis,orthopedicimpairments,andotherneurologicaldisorders, orwhohaddifficultyunderstandingthequestionnaireswere excluded. Theclinical team responsible forthe Integrative CareandResearchCenterselectedtheparticipants.

Giventhescarcityofstudiesintheliteraturethatservedas thebasisforthisstudy,thesamplesizewascalculatedbased onacorrelationcoefficientof0.5.Asampleof43subjectswas estimatedwithapowerof80%andanalphaof0.05.This sam-plewasincreasedby20%duetothelargebiologicalvariability inthiscondition.

Datawerecollectedinastandardizedmannerafterthe par-ticipantssignedanInformedConsentform.Theprojectwas approvedbytheEthicsCommitteeinResearchoftheBahia Schoolof Medicineand Public Health (registrationnumber CAAE13568213.8.0000.5544).

Socialclasswasdefinedaccordingtocriteriaofthe Brazil-ianAssociationofSurveyCompanies(ABEP),whichdividesthe

populationintosixsocioeconomicstratanamelyA,B1(high), B2,C1(middle),C2,D,andE(low).

TheBriefPainInventory(BPI)wasusedtoassesspain inten-sityandinterference.12_{Toassesspainintensityweusedtwoof} thefoursensoryquestionsofthisinstrument(maximumand averagepainintensityinthelast24h).Toassesspain interfer-enceweusedthesevenitemsofthepaininterferencesection oftheBPI(generalactivity,mood,walkingability,normalwork, relations,sleep,andenjoymentoflife).

TheShortForm36(SF-36)Questionnairewasusedtoassess qualityoflifeaccordingtothefollowingdomains:functional capacity, physical aspect, pain, emotional aspect, general health,socialaspect,mentalhealth,andvitality.13

Afterassuringdatahadnormaldistribution,theSpearman testwasusedtoassessthecorrelationofeachofthetwo sen-soryitemsoftheBPIwiththeseveninterferenceaspectsof theBPIandtoeachdomainoftheSF-36.Numericalvariables were expressedasmeanand standarddeviation.All analy-seswere performedusingthe StatisticalPackageforSocial Sciences(SPSS)version14.0forWindows(Chicago,USA).

Of the 56 participants, 66.1% were female. The mean age was52±11.1yearsold,and thebody massindex(BMI) was24.5±4.5kg/m2_{.Therewasahigherproportionof}

non-whiteindividuals(92.9%)andindividualsbelongingtoclassC (51.8%).Ofthese,42.9%usedadevicesuchasacaneorcrutch forwalking,and26.8%madesystematicuseofmuscle relax-antsforpainrelief.Themeandiseasedurationwas10.7±7.9 years.Themeanmostpronouncedpaininthelast24hwas reportedtobe4.88±3.06inintensity,whilethemean pain scorewasreportedtobe4.66±3.75.Thesitesmostaffected bypainwerethelumbarregion,reportedby37participants (66.1%);theknee,reportedby33(58.9%);theleg,reportedby 18(32.1%);andthefeet,reportedby26(48.4%).

Table1showshowsensoryaspectsofpainimpacted inter-ferenceaspects.Moderatetohighcorrelationswereobserved betweenthelevel ofpainintensity inthe last24hand the averagepaininthelast24hwithallareasofpaininterference. Acorrelationanalysisbetweenthemostpronouncedlevelof painandaveragepaininthelast24hwiththedomainsofthe SF-36showedthatahigherintensityofpaincorrespondedto worsescoresindifferentdomainsoftheQoL(Table2).Table2 showscorrelationsbetweentheSF-36domainsandthe BPI interferenceofpainitems.Allbutthesocialaspectsofthe SF-36domainswerenegativelycorrelatedwithpaininterference. Thisstudyconfirmedthehypothesisthatpainappearsto bemoderateinthispopulation;withincreasedpainintensity,

Table1–Correlationbetweenreactionandsensoryaspectsofpain,accordingtotheBriefPainInventory.

Interferencepain Worstlevelofpain(last24h) p Averagepain(last24h) p

Generalactivity 0.625 <0.001 0.584 <0.001 Humor 0.590 <0.001 0.527 <0.001 Abilitytowalk 0.422 0.001 0.548 <0.001 Capacitytowork 0.561 <0.001 0.620 <0.001 Interpersonalrelationships 0.589 <0.001 0.507 <0.001 Sleep 0.413 0.002 0.569 <0.001

Abilitytoappreciatelife 0.478 <0.001 0.479 <0.001

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Table2–Correlationbetweendomainsofqualityoflife(SF-36)withtheintensityofpainandreactiontopainattitudesfront(IBD).

Worst levelof pain p-Value Average pain p-Value General activities

p-Value Humor p-Value Ability towalk

p-Value Work p-Value Relationship p-Value Sleep p-Value Appreciate life p-Value Functional capacity −0.24 0.070 −0.18 0.160 −0.41 0.002 −0.37 0.004 −0.40 0.002 −0.42 0.001 −0.35 0.008 −0.54 0.083 −0.17 0.180 Physical appearance −0.43 ≤0.001 −0.57 ≤0.001 −0.47 ≤0.001 −0.44 0.001 −0.44 0.001 −0.46 ≤0.001 −0.53 ≤0.001 −0.43 0.001 −0.34 0.010 Pain −0.59 ≤0.001 −0.54 ≤0.001 −0.57 ≤0.001 −0.57 ≤0.001 −0.67 ≤0.001 −0.46 ≤0.001 −0.39 0.003 −0.47 ≤0.001 −0.54 ≤0.001 Generalstate −0.37 0.004 −0.47 ≤0.001 −0.46 ≤0.001 −0.54 ≤0.001 −0.35 0.007 −0.37 0.005 −0.46 ≤0.001 −0.37 0.005 −0.38 0.004 Vitality −0.52 ≤0.001 −0.47 ≤0.001 −0.52 ≤0.001 −0.49 ≤0.001 −0.41 0.001 −0.47 ≤0.001 −0.50 ≤0.001 −0.35 0.007 −0.51 ≤0.001 Socialaspect −0.29 0.029 −0.23 0.080 −0.42 0.001 −0.37 0.005 −0.23 0.077 −0.39 0.003 −0.48 ≤0.001 −0.37 0.004 −0.50 ≤0.001 Emotional aspect −0.42 0.001 −0.48 ≤0.001 −0.51 ≤0.001 −0.56 ≤0.001 −0.35 0.007 −0.41 0.002 −0.64 ≤0.001 −0.56 ≤0.001 −0.46 ≤0.001 Mentalhealth −0.41 0.001 −0.38 0.004 −0.52 ≤0.001 −0.55 ≤0.001 −0.32 0.015 −0.40 0.002 −0.52 ≤0.001 −0.29 0.028 −0.49 ≤0.001 Spearmancorrelationtest,alpha5%.

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thegreatertheimpactonqualityoflifethemoreintenseare reactiveattitudestowardpain.

Santosetal.14_{investigatedthepainprofilein191subjects} oflowsocioeconomicstatusinthesamecity,usingtheBPI. Theyfoundthatpainwasofmoderateintensityin46.8%,most oftenintheknees(46.1%)andthelumbarspine(42.4%).These findingscorrespondtoresultsofthepresentstudy.Itis possi-blethatlowsocioeconomicstatusincreasesthefrequencyof paininthelowerbackandkneesbecauseofenvironmental conditions,labor,andtransportation,regardlessofthehealth conditionsgeneratedbyHTLV-1.4,7

The moderate inverse correlation between mean pain intensity and the ability to work can beexplained by the lowsocioeconomicstatusofoursample.Thissocioeconomic conditionisassociatedwithphysicallydemandingjobsand menial work, which generally is limited by physical dys-functionassociatedwithhighintensitypain.15_{Ratifyingthis} negativeinfluenceofpainontheperformanceofmeniallabor activities,Herreroetal.16_{demonstratedimproved} productiv-ity ofworkersin manuallabor afterdrugtherapy forpain relief.

TheimpactofpaininthefunctionalcapacityoftheSF-36 andthecorrelationbetweenthemostpronouncedpainlevel andgeneralactivityoftheBPIweremoderate.Perhapsthese findingsarejustifiedbycharacteristicsofthesample,which largelyconsistedofpeoplewhowerenotwheelchair-bound orusedassistivedevices,andofpeoplewhoneededonlyone crutch.Inaddition,weincludedonlypatientswhohadbeen diagnosedwithorwereprobableofHAM/TSPandwhowere likelyabletostandbythemselves.

Martins et al.10 _{found a high impact of the disease in} functionalcapacityandobservedlowerscoresin wheelchair-boundpatientscomparedtothesubgroupofthosewhostill could walk. Itis possible that those patients who are not wheelchair-boundfeel ableto implementmostdaily activ-ities, even with compensationof movement. Furthermore, myelopathydoesnotaffectfunctionoftheupperlimbs,which enablespatientstoparticipateinmanytasks.Reinforcingthe ideathatlocomotionitselfisnotthemainfactorinterfering withfunctionalcapacityinHTLV-1,Franzoietal.9_showedthat thelossofbladdercontrolisworsethanlossoflocomotion.

Thephysicalaspectdomainshowedamoderatelynegative impactfrompain.Thisdomainassesseshowdailyactivities andworkareaffectedinrelationtotheintensityoftheactivity, thenumberoftasks,andthelevelofeffort.Thispopulation presents reduced muscle and cardiorespiratory endurance, andthussusceptibletoanincreasedsedentarylifestyle.The degreeoffatigueincreases inindividuals who remainin a bentposture,suchaspeoplewithHAM/TSP,andthosewith spinalcordinjurybecause ofmuscle weakness.17–19 _Severe fatigueassociatedwithspinalcordinjurycanhavenegative implicationsinQoLandactivitiesofdailyliving.9,19

Weobservedaweakcorrelationbetweenthelevelofpain andthesocialaspectdomain.Althoughtheassessmenttools usedtomeasurethesocialaspectdomainhavecertain weak-nesses,thisresultmightberelatedtoasampleconsistingof lowersocialclassofindividualswhooftenhavehigherlevels ofresilience.20

Inthisstudywedidnotassessthesubgroupsofpatients withneuropathicpain, nociceptivepain, and bothtypesof

painseparately.Asneuropathicpainisoftenassociatedwith moresevereimpactinQoL,itispossiblethatourresults can-notbeextendedtoallpatientswithHTLV-1.Wealsodidnot identifypatientswithurinaryandsexualdysfunction,which arealsoleadingcausesofdecreasedQoLinthispopulation. Future studies should address these points inlongitudinal studiestocollectmoreconsistentdataaboutthe impactof thoseaspectsintheQoLofpeopleinfectedbyHTLV-1.

The SF-36 and BPI, although generic assessment tools, wereshowntobeadequateinevaluatingtheissuesfacedby patientswithHTLV-1.Thequalityoflifeandreactiveattitudes to pain were inversely correlated. Thegreatest impacts of painintensityinvolveddifficultieswithwalkingandworking. Inaddition,difficultiesininterpersonalrelationships under-minedtheemotionalaspectofqualityoflife.

Conflicts

of

interest

Theauthorsdeclarenoconflictsofinterest.

Acknowledgements

Wegiveourdeepestthankstotheparticipantsofthestudy, theIntegrativeCareandResearchCenter,andthefamiliesof individuals infectedwithHTLV-1, whocontributed tomake thisresearchrelatedtopain.

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