Rev. Bras. Reumatol. vol.57 número1

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w w w . r e u m a t o l o g i a . c o m . b r

REVISTA

BRASILEIRA

DE

REUMATOLOGIA

Original

article

Health

quality

of

life

in

Turkish

polio

survivors:

impact

of

post-polio

on

the

health

quality

of

life

in

terms

of

functional

status,

severity

of

pain,

fatigue,

and

social,

and

emotional

functioning

夽

Yesim

Garip

a,∗

,

Filiz

Eser

b

,

Hatice

Bodur

b

,

Bedriye

Baskan

b

,

Filiz

Sivas

b

,

Ozlem

Yilmaz

b

a_Ankara_Basak_Medical_Center,_Department_of_Physical_Medicine_and_{Rehabilitation,}_Ankara,_Turkey

b_Ankara_Numune_Training_and_Research_Hospital,_Department_of_Physical_Medicine_and_{Rehabilitation,}_Ankara,_Turkey

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Articlehistory:

Received14February2014 Accepted1December2014 Availableonline10March2015

Keywords:

Postpolio-syndrome(PPS) Qualityoflife

Fatigue Rehabilitation

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b

s

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t

Objective:Todeterminetheimpactofpostpolio-syndromeonqualityoflifeinpolio sur-vivors.

Methods:Fortypoliosurvivorswereincludedinthestudy.Twenty-onepatientsfulfilling theHalstead’spostpolio-syndromecriteriaparticipatedinpostpolio-syndromegroup.The remainingnineteenpatientsformednon-postpolio-syndrome group.Controlgroupwas composedoffortyhealthysubjects.QualityoflifewasevaluatedbyNottinghamHealth Profile, depressionbyBeckDepressionScaleandfatiguebyFatigueSymptomInventory. Isometricmusclestrengthwasmeasuredbymanualmuscletesting.

Results:Total manual muscletesting scorewas 26.19±13.24 (median:29) in postpolio-syndrome group and 30.08±8.9 (median: 32) in non-postpolio-syndrome group. Total manualmuscletestingscoresofnon-postpolio-syndromegroupweresignificantlyhigher thanthatofpostpolio-syndromegroup.Patientswithpostpolio-syndromereported signifi-cantlyhigherlevelsoffatigueandreducedqualityoflifeintermsofphysicalmobility,pain andenergywhencomparedwithpatientswithoutpostpolio-syndromeandcontrolgroup. Itwasnotreportedastatisticallysignificantdifferenceinsocialandemotional function-ingandsleepqualitybetweenpostpolio-syndrome,non-postpolio-syndromeandcontrol groups.AlsoitwasnotfoundanystatisticallysignificantdifferenceinBeckDepression Scalescoresamongthegroups.

夽

ThisstudyoriginatedfromtheDepartmentofPhysicalMedicineandRehabilitation,AnkaraNumuneTrainingandResearchHospital, Ankara,Turkey.

∗ _{Corresponding}_author_.

E-mail:dryesimgarip@gmail.com(Y.Garip).

http://dx.doi.org/10.1016/j.rbre.2014.12.006

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rev bras reumatol.2017;57(1):1–7

Conclusions: Postpolio-syndrome hasa negativeimpact on quality of life in terms of functionalstatus,severityofpainandenergy.Theidentification,earlyrecognitionand reha-bilitationofpostpolio-syndromepatientsmayresultinanimprovementintheirqualityof life.

(http://creativecommons.org/licenses/by-nc-nd/4.0/).

Qualidade

de

vida

relacionada

com

a

saúde

em

sobreviventes

turcos

da

pólio:

impacto

pós-pólio

na

saúde

relacionada

com

a

qualidade

de

vida

em

termos

de

estado

funcional,

gravidade

da

dor,

fadiga

e

funcionamento

social

e

emocional

Palavras-chave: Síndromepós-pólio Qualidadedevida Fadiga

Reabilitac¸ão

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Objetivo: Determinaroimpactoda síndromepós-pólionaqualidadedevidanos sobre-viventesdapólio.

Métodos:Quarentasobreviventesdapólioforamincluídosnoestudo.Participaramdogrupo desíndromepós-pólio21pacientesqueatenderamaoscritériosdesíndromepós-póliode Halstead.Os19restantesformaramogruponãosíndromepós-pólio.Ogrupocontrolefoi compostopor40indivíduossaudáveis.AqualidadedevidafoiavaliadapeloNottingham HealthProfile,adepressãopelaEscaladeDepressãodeBeckeafadigapeloInventáriode SintomasdeFadiga.Aforçamuscularisométricafoimedidaportestemuscularmanual. Resultados: Oescoretotaldotestemuscularmanualfoi26,19±13,24(mediana:29)nogrupo desíndromepós-pólioe30,08±8,9(mediana:32)nogruponãosíndromepós-pólio.Escores totaisdetestemuscularmanualdegruponãosíndromepós-pólioforamsignificativamente maioresdoqueosdogrupodesíndromepós-pólio.Ospacientescomsíndromepós-pólio relataramníveissignificativamentemaioresdefadigaequalidadedevidareduzidaem ter-mosdemobilidadefísica,doreenergiaquandocomparadoscompacientessemsíndrome pós-pólio egrupocontrole. Nãoserelatouumadiferençaestatisticamentesignificativa nofuncionamentosocialeemocionalenaqualidadedosonoentregruposdesíndrome pós-pólio,nãosíndromepós-pólioecontrole.Alémdisso,nãoseencontroudiferença esta-tisticamentesignificativanosescoresdaEscaladeDepressãodeBeckentreosgrupos. Conclusões:Asíndromepós-póliotemumimpactonegativonaqualidadedevidaemtermos deestadofuncional,gravidadedadoreenergia.Aidentificação,oreconhecimentoprecoce eareabilitaçãodospacientescomsíndromepós-póliopodemresultaremumamelhoriada qualidadedevida.

Introduction

Postpolio-syndrome(PPS)isaneurologicdisorder character-ized bya collection oflatemanifestations occurringmany yearsaftertheinitialpoliomyelitisinfection.Neworincreased muscleweaknessisthehallmark.Theotherclinicalfeatures are fatigue, pain in joints, bones and muscles, cold intol-erance and bulbar symptoms (swallow,speech, respiratory symptoms).Fatiguehasbeendescribedasthemostcommon symptom. PPS symptoms affect the abilityto perform the activitiesofdailyliving,mobility,upperlimbfunction,and respiratorycapacity.PPShasanegativeeffectonqualityof life(QoL).1–3

ThepresentstudyaimedtoinvestigateQoLinpolio sur-vivorsinTurkey,toassesstheimpactofPPSonvariousQoL domainsintermsoffunctionalstatus,severityofpain,social andemotionalfunctioning.

Material

and

methods

The study included a total of 40 polio survivors (21 men, 19 women) who were followed at the outpatient clinic of physicalmedicineandrehabilitationdepartmentofa train-ing and research Hospital whichis amajor referral center under MinistryofHealth,locatedinAnkara,capitalcityof Turkey,betweenDecember2012andSeptember2013.Study wasconductedinaccordancewiththeprinciplessetforthin theHelsinkiDeclaration2008.

67.5% of polio survivors (21 patients) fulfilling the Hal-stead’s PPS criteria4 _participated _in _PPS _group, _and _the

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painand/orjointpain,newmuscleweaknessinthemuscles previouslyaffectedorunaffected)afterastableperiodofat least15years;(4)exclusionofothermedicalconditionsthat mayexplainthesesymptoms.4

Isometricmusclestrengthwasmeasuredbymanual mus-cletesting(MMT)accordingtoMedicalResearchCouncil(MRC) Scale.5 _Hip_flexors,_knee _extensors,_knee_flexors,_ankle

dor-salflexorandankleplantarflexorswereevaluatedbilaterally, thentotalscorewasobtained(maximumscore:50).

Controlgroupconsistedof40ageandsexmatchedhealthy subjects(20men,20women)whosetotalMMTscoreswere 50. Inclusion criteria for all subjects were no other disor-dersincludingfibromyalgia,hypertension,diabetesmellitus, hepaticandrenaldiseases,inflammatoryarthritis,other neu-rologicalorpsychiatricdisordersthatmaycausefatigue.

Symptomsincludingmusclepain,fatigue,jointpain,sleep disorders,respiratorydisordersanddysphagiawereanalyzed inPPSandnon-PPSgroups.QoLwasassessedbyNottingham HealthProfile(NHP)6_and_depression_by_using_Beck_Depression

Scale(BDS).7

FatiguewasevaluatedbyusingTurkishversionofFatigue SymptomInventory(FSI).8_FSI,_first_published_in_1998,_is_a

14-itemself-reportmeasuredesignedtoassessfatigueintensity (fouritems),duration(twoitems),itsinterferencewithquality oflife(7items),andthedailypatternoffatigue.Intensityis measuredonseparate11-pointscales(0=notatallfatigued; 10=extremefatigue)thatassessmost,least,currentfatigue and averagefatigueinthe previous week.Eachofthese is scoredasanindividualitem.Theinterferenceitemsassessthe extenttowhichfatigueinterferedwitharespondent’sgeneral activitylevel,abilitytobatheanddress,workactivity,ability toconcentrate,relationswithothers,enjoymentoflifeand moodduringthepreviousweekusingan11pointratingscale (0=no interferenceand 10=extremeinterference). These 7 itemsareaveragedtoobtainaninterferencescalescore. Dura-tionitems(numberofdaysfatigued,amountoftimefatigued) assessfatiguefrequency.Itismeasuredasthenumberofthe days(from0to7days)inthepastweekthatrespondentsfelt fatiguedandtheamountofeachdayonaveragerespondents felt fatigued (0=noneofthe day, 10=the entireday). Each oftheseisscoredasanindividualitem.Thefinalitemasks respondentstoindicatetheirdailypatternoffatigueandso providesdescriptiveinformationaboutpossiblediurnal vari-ationinthedailyexperienceoffatigue(0=notatallfatigued, 1=worseinthemorning,2=worseintheafternoon,3=worse intheevening,4=noconsistentdailypatternoffatigue).Final

itemprovidesinformationonlyandisnotintendedtobeused asaquantitativescale.9–11 _The_items_included_in_the_FSI_are

showninAppendix1.

Statisticalanalyses

Data were presentedby descriptiveanalysis withmeans±

standard deviation (SD) and median scores. Because vari-ables were not normally distributed, Kruskal–Wallis and Mann–WhitneyUtestswereperformedtoassessstatistically significant differencesinMMT, BDS,FSIandNHPscoresof thegroups.CategoricalvariableswereevaluatedbyChi-square test.Avalueofp<0.05wasconsideredstatisticallysignificant. AllanalyseswereperformedusingStatisticalPackageforthe SocialSciences–13.0(SPSS-13.0)software.

Results

Demographicandclinicalcharacteristicsofthepatientsand controlsubjects are summarizedinTable1.Meanage was 38.15±7.17 in PPS group, 37±4.86 in non-PPS group and 35±8.42inthecontrolgroup.Atthetimeofacutepolio,polio survivorswere19.2±12.23monthsoldonaverage(3months to4years,median:18months).

OfthepatientsinPPSgroup,12hadparalysesofonelimb, 5hadparalysesoftwolimbs,2hadparalysesofthreelimbs, and2hadparalysesoffourlimbs.Oneofthemreportedthat thediseaseaffectedtherespiratorysystem.Ofthepatientsin non-PPSgroup,15hadparalysesofonelimb,3hadparalyses oftwolimbs,and1hadparalysesofthreelimbs.Noneofthem hadparalysesoffourlimbs.Alsononeofthemreportedthat therespiratorysystemwasaffected(Table1).

Themostcommonsymptoms werefatigue(16 patients, 76.2%), and muscle pain (15 patients, 71.4%) inPPS group. Thesewerefollowedbysleepdisorders(12patients,57.14%) andjoint pain(11patients, 52.38%),respectively.Dysphagia andrespiratorydisorderswerenotedinonepatient(4.76%). Innon-PPSgroup,the mostfrequentsymptomswere mus-clepain,fatigue,sleepdisordersandjointpain,whichwere reported in 42.1%, 36.8%, 31.58%, 15.79% of the patients, respectively.Fatigue,jointpainandmusclepainwere signif-icantly higherinPPS group(p<0.05).Total MMTscore was 26.19±13.24(median:29)inPPSgroupand30.08±8.9(median: 32)innon-PPSgroup.AccordingtotheMann–WhitneyUtest,

Table1–Demographicandclinicaldata.

PPSgroup(n=21) Non-PPSgroup(n=19) Controlgroup(n=40)

Age,mean±SD 38.15±7.17 37±4.86 35±8.42

Gender(men/women) 11/10 13/6 20/20

Ageofacutepolio(months) 19.85±13.79 17.84±8.45 Paralysesofonelimb(numberofpatients) 12 15 Paralysesoftwolimbs(numberofpatients) 5 3 Paralysesofthreelimbs(numberofpatients) 2 1 Paralysesoffourlimbs(numberofpatients) 2 0 TotalMMTscore(0–50),mean±SD 26.19±13.24 30.08±8.9

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Table2–ComparisonoftotalMMTscoresandsymptomsbetweenthePPSandnon-PPSgroups.

PPSgroup(n=21) Non-PPSgroup(n=19) pvalue

TotalMMTscore(0–50),mean±SD/median 26.19±13.24/29 30.08±8.9/32 0.04*

Presenceofmusclepain,n(%) 15(71.4%) 8(42.1%) 0.04*

Presenceoffatigue,n(%) 16(76.2%) 7(36.8%) 0.01*

Presenceofjointpain,n(%) 11(52.38%) 3(15.79%) 0.022*

Presenceofsleepdisorders,n(%) 12(57.14%) 6(31.58%) 0.125

Presenceofrespiratorydisorders,n(%) 1(4.76%) 0 0.48

Presenceofdysphagia,n(%) 1(4.76%) 0 0.48

MMT,manualmuscletesting.

∗ _p_<_0.05_{(significant).}

totalMMTscoresofnon-PPSgroupweresignificantlyhigher thanthatofPPSgroup(p<0.05)(Table2).

Kruskal–Wallistestrevealedthatdifferencesamonggroups weresignificantinallFSIsubgroups(p<0.05).Accordingtothe Mann–WhitneyUtest,FSIscoresofPPSgroupwere signifi-cantlyhigherthanthatofbothnon-PPSgroupandthecontrol group(p<0.05)(Table3).Itwasnotfoundanystatistically sig-nificantdifferenceinBDSscoresbetweenPPS,non-PPSand control groups (p>0.05). Median values of BDS and FSI in patientsandthecontrolgrouparegiveninTable3.

Kruskal–Wallistestshowedthatdifferencesamonggroups were significant in all NHP subgroups except social isola-tion, emotional reaction and sleep (p<0.05). According to the Mann–Whitney U test, PPS group scored significantly higher in pain, physicalmobility and energysubgroups of NHP than non-PPS and the control group (p<0.05). Itwas not reported a statistically significant difference in social isolation,emotionalreactionandsleepsubgroups.Also non-PPSgroup reported poorer levels in all NHPgroups except social isolation, emotional reaction and sleep subgroups, whencomparedtothecontrolgroup(Table4).Median val-uesofNHPscoresinpatientsandthecontrolgrouparegiven

inTable4.

Discussion

TheaimofthisstudywastoinvestigateQoLinpoliosurvivors inTurkeyinordertoassesstheimpactofPPSonQoLinterms offunctional status, severityofpain, social and emotional functioning.

TheresultsshowedthatPPSimpairedQoLincluding physi-calmobility,painandenergy,butdidnotaffectemotionaland socialhealth.Furthermoreitwasnotfoundanystatistically significantdifferenceinBDSscoresbetweenPPS,non-PPSand controlgroups.ThisfindingconfirmedthatPPSdidnothave anegativeimpactonemotionalstatus.Ourresultssupport thepreviousstudiesintheliterature.Itwasreportedlower scoresinphysicalfunctioningin38post-poliopatientsinthe studyofMcNaughtonetal.whereQoLwasmeasuredbyusing ShortForm-36(SF-36).12 _Similarly,_Jacob_investigated_QoL_in

101poliosurvivorsfromtwopost-polioclinicsinIsraeland reportedlowphysicalscoresandnormalmentalscores includ-ingemotionalandsocialfunctioninginpost-poliopatients.13

Tateetal.confirmedthatpoliosurvivorsdidnotdifferfrom thegeneralpopulationinlevelsofdepression.14_By_contrast,

Schanke,15 _Conrady16 _and _Hazendonk17 _reported _that _PPS

patientshadhigherlevelsofdepressivesymptomsas com-paredtocontrolgroups.AlsoOnetal.foundlowerphysical, socialandemotionalscoresinPPSgroupwhereQoLwas eval-uatedbyusingNHP.18

PatientswithPPSexperiencedsignificantlyhigherlevelsof fatiguewhencomparedtonon-PPSandcontrolgroup.This findingsupportsthepreviousstudies.18–20_To_our_knowledge,

this isthe first study toevaluatefatigueinpolio survivors byusingFSI.Fatigueisacomplexsymptomanditmustbe assessedbyamultidimensionalquestionnairewhich identi-fiesdifferentaspectsoffatigueindetail.FSIdealswithvarious characteristicsoffatigueanditsperceivedinterferencewith quality oflifeinterms ofgeneralwork activities,abilityto concentrate,andenjoymentoflifeandmood.Furthermore,it statesdailypatternsofFatigue.10,11_It_was_suggested_as_a

use-fulinstrumentinassessmentoffatiguebythereviewers.21_In

previousstudies,nosignificantdifferenceswerefoundintotal MMTscoresbetweenPPSandnon-PPSgroups.18,22_Contrarily,

inourstudy,totalMMTscoresofPPSgroupweresignificantly lowerthanthatofnon-PPSgroup.

Inthepresentstudy,themostcommonsymptomswere fatigue(76.2%), andmuscle pain(71.4%)inPPSgroup.This resultisinaccordancewithotherclinicalstudies.Inastudy byNolletondisabilityandfunctionalstatusinDutchpatients withPPS,78%ofthepatientsselectedfatigueastheirmajor problem.22 _In_Conde’s_study,_the _most_frequent_complaints

were fatigue (87.1%), muscle pain (82.4%), and joint pain (72%).23 _We_found_that_prevalence_of_fatigue,_joint_pain_and

musclepainwassignificantlyhigherinPPSgroupthan non-PPSgroup.Prevalenceofsleepdisorderswassimilarinboth of the groups. 57% ofPPS patients had sleep disorders. In the study of van Kralingen, prevalence of sleep disorders wasfoundas50%.24_Östlund_reported_that_post_polio_related

fatiguehadanegativeeffectonsleepquality.25_Contrarily,_in

ourstudy,fatiguedidnotinfluenceNHPsleepscores. Thesmallsamplesizedeemedourmainlimitation.Itis duetotheexclusionofconcomitantmedicalandpsychiatric diseasesthatmaycausefatigue.

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PPSgroup(n=21) Medianvalues

Non-PPSgroup (n=19) Medianvalues

Controlgroup (n=40) Medianvalues

Chi-square (Kruskal–Wallis)

pvalueX (Mann–WhitneyU)

pvalueY (Mann–WhitneyU)

pvalueZ (Mann–WhitneyU)

BeckDepressionScale 16 13 12 5.43 0.125 0.06 0.83

Mostfatigue 9 5 3 53.29* _0.00* _0.00* _0.001*

Leastfatigue 7 2 0 62.58* _0.00* _0.00* _0.00*

Currentfatigue 7 4 2 53.68* _0.00* _0.00* _0.00*

Averagefatigue 7 4 2 53.88* _0.00* _0.00* _0.00*

Interferencescale 7 3 1 52.29* _0.00* _0.00* _0.002*

Numberofdaysfatigued 7 3 2 52.46* _0.00* _0.00* _0.002*

Amountoftimefatigued 8 4 2 57.23* _0.00* _0.00* _0.00*

pvalueX:pvaluebetweenPPSandnon-PPSgroup. pvalueY:pvaluebetweenPPSandcontrolgroup. pvalueZ:pvaluebetweennon-PPSandcontrolgroup.

∗ _p_<_0.05_{(significant).}

Table4–ComparisonofQoLbetweenthegroups.

PPSgroup(n=21) Medianvalues

Non-PPSgroup (n=19) Medianvalues

Controlgroup (n=40) Medianvalues

Chi-square (Kruskal–Wallis)

pvalueX pvalueY pvalueZ

NHPphysicalmobility 87.5 50 0.0 54.04* _0.00* _0.00* _0.00*

NHPpain 85.71 42.86 0.0 61.20* _0.00* _0.00* _0.00*

NHPenergy 100 50 0.0 31.66* _0.00* _0.00* _0.00*

NHPsocialisolation 25 25 25 0.55 0.56 0.72 0.55

NHPemotionalreaction 37.5 25 25 2.38 0.79 0.10 0.43

NHPsleep 20 20 20 3.03 0.27 0.08 0.76

NHP,NottinghamHealthProfile.

pvalueX:pvaluebetweenPPSandnon-PPSgroup. pvalueY:pvaluebetweenPPSandcontrolgroup. pvalueZ:pvaluebetweennon-PPSandcontrolgroup.

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6 Conflicts

of

interest

Theauthorsdeclarenoconflictsofinterest.

Appendix

1. The

Fatigue

Symptom

Inventory

(FSI)

1-Rate your level of fatigue on the day you felt most fatigued during the past week.

0 1 2 3 4 5 6 7 8 9 10 Not at all fatigued Extreme fatigue

2-Rate your level of fatigue on the day you felt least fatigued during the past week.

0 1 2 3 4 5 6 7 8 9 10 Not at all fatigued Extreme fatigue

3- Rate your level of fatigue on the average during the last week.

0 1 2 3 4 5 6 7 8 9 10

Not at all fatigued Extreme fatigue

4- Rate your level of fatigue right now.

0 1 2 3 4 5 6 7 8 9 10

Not at all fatigued Extreme fatigue

5-Rate how much in the past week, fatigue interfered with your level of activity.

0 1 2 3 4 5 6 7 8 9 10

No interference Extreme interference

6-Rate how much, in the past week fatigue interfered with your ability to bathe and dress yourself.

0 1 2 3 4 5 6 7 8 9 10

7- Rate how much, in the past week fatigue interfered with your normal activity (includes both work outside the home and housework).

0 1 2 3 4 5 6 7 8 9 10

8-Rate how much, in the past week fatigue interfered with your ability to concentrate.

0 1 2 3 4 5 6 7 8 9 10

9- Rate how much, in the past week fatigue interfered with your relations with other people.

0 1 2 3 4 5 6 7 8 9 10

10- Rate how much, in the past week fatigue interfered with your enjoyment of life.

0 1 2 3 4 5 6 7 8 9 10

11- Rate how much, in the past week fatigue interfered with your mood.

0 1 2 3 4 5 6 7 8 9 10

12-Indicate how many days, in the past week, you felt fatigued for any part of the day.

0 1 2 3 4 5 6 7 days

13- Rate how much of the day, on average, you felt fatigued in the past week.

0 1 2 3 4 5 6 7 8 9 10

None of the day The entire day

14-Indicate which of the following best describes the daily pattern of your fatigue in the past week

0 1 2 3 4

0=notatallfatigued,1=worseinthemorning,2=worseintheafternoon,

3=worseintheevening,4=noconsistentdailypatternoffatigue.

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