w w w . r e u m a t o l o g i a . c o m . b r
REVISTA
BRASILEIRA
DE
REUMATOLOGIA
Review
article
Psychological
aspects
of
juvenile
fibromyalgia
syndrome:
a
literature
review
夽
Rubens
Goulart
a,∗,
Cinthia
Pessoa
b,
Império
Lombardi
Junior
caPost-GraduateInterdisciplinaryPrograminHealthSciences,UniversidadeFederaldeSãoPaulo,Santos,SP,Brazil
bRehabilitationandPhysiotherapyService,PrefeituraMunicipaldeSantos,Santos,SP,Brazil
cTheHumanMovementSciencesDepartment,UniversidadeFederaldeSãoPaulo,Santos,SP,Brazil
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c
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Articlehistory:
Received23October2014 Accepted17July2015
Availableonline27October2015
Keywords: Fibromyalgia Adolescent Child Psychology Review
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Juvenilefibromyalgiasyndrome(JFMS)isanon-inflammatorychronicpainconditionthat occurs mainly in girlsaged 9–15 years. JFMSis characterized byconstant widespread painindifferentpartsofthebody,poorsleepquality,daytimesleepinessandanaltered mood.Concomitantpsychologicalandorganicfactorsresultinadiminishedcapacityto copewithpain.Thequalityoflife ofindividualswithchronicpainandtheircaregivers isseverelyrestrictedandtheoccurrenceofsymptomsofanxietyanddepressionis com-moninthispopulation.Theaimofthepresentstudywastoperformasystematicreview oftheliteratureonpsychosocialfactorsrelatedtoJFMS.Thefindingsrevealdifferences inopinion betweenpatientsandfamilymembersregardingtheeffectofthecondition, asmotherstendtoclassifyJFMSasmoreseverethanthepatientsthemselves. Individ-ualswithJFMSseemtosharethesame personalitytraitsandthereseemstobeatype offamilyenvironmentthatisfavorabletotheoccurrenceofthiscondition.Psychological andfunctionalaspectsshouldbetreatedwithmethodsthatcanhelppatientsandfamily membersaltertheircopingstrategiesregardingday-to-dayproblems,attenuatethe dys-functionalconsequencesofpainandfatigueanddiminishtheriskofcatastrophizingthat individualssubmittedtoconstantpaindevelopinrelationtotheirsurrounding environ-ment.
©2015ElsevierEditoraLtda.Allrightsreserved.
夽
StudyconductedatProgramadePósGraduac¸ãoInterdisciplinaremCiênciasdaSaúde,UniversidadeFederaldeSãoPaulo,Santos,SP, Brazil.
∗ Correspondingauthor.
E-mail:rubensgoulart@yahoo.com(R.Goulart). http://dx.doi.org/10.1016/j.rbre.2015.07.017
Aspectos
psicológicos
da
síndrome
da
fibromialgia
juvenil:
revisão
de
literatura
Palavras-chave: Fibromialgia Adolescentes Crianc¸as Psicologia Revisão
r
e
s
u
m
o
Asíndromedafibromialgiajuvenil(SFJ)éumacondic¸ãodolorosanãoinflamatóriacrônica queocorreprincipalmenteemmeninascomidadesentre9e15anos,podendoser car-acterizadapordoresgeneralizadaseconstantesemváriasregiõesdocorpo,distúrbiosdo sono,fadigadiurnaeestadodehumoralterado.Fatorespsicológicosebiológicos concomi-tantesresultaramnadiminuic¸ãodacapacidadedelidarcomador.Aqualidadedevidadas crianc¸asquesofremdedorescrônicas,eadeseuscuidadores,éseveramenteprejudicada, eaocorrênciadesintomasdeansiedadeedepressãoémaiscomumnessapopulac¸ão.Este estudoobjetivourealizarumarevisãosistemáticadaliteraturadosfatorespsicossociais relacionadoscomaSFJ.Osachadosrevelamumapercepc¸ãodivergenteentrepacientese familiaresemrelac¸ãoaosefeitosdacondic¸ão,sendoqueasmãesdospacientestendema classificaradoenc¸acomumagravidademaiorqueosprópriospacientes.Ospacientescom fibromialgiaparecemcompartilharosmesmostrac¸osdepersonalidade,epareceexistirum tipodeambientefamiliarfavorávelàocorrênciadadoenc¸a.Asimplicac¸õespsicológicase funcionaisdevemsertratadascommétodosqueajudempacientesefamiliaresamodificar suasestratégiasdeenfrentamentodosproblemascotidianos,aaliviarasconsequências disfuncionaisdadoredafadigaeadiminuiroriscodecatastrofizac¸ão.
©2015ElsevierEditoraLtda.Todososdireitosreservados.
Introduction
Fibromyalgia in children and adolescents is a non-inflammatory chronic pain condition that mainly occurs ingirlsagednineto15years1andisthereforedenominated juvenile fibromyalgia syndrome (JFMS). This syndrome is relatively under-investigated, but is characterized by con-stant widespread pain indifferent parts of the body, poor sleep quality, daytime sleepiness and an altered mood. Despite the similarities between JFMS and fibromyalgia in adulthood, the reduction in physical activity, absenteeism from school and the less-developed coping mechanisms in youths justify the differentiated analysis of JFMS.2–5 The quality of life of individuals with chronic pain and their caregivers is severely restricted and the occurrence ofsymptomsofanxietyanddepression iscommoninthis population.6
Theaimofthepresent studywas toperforma system-aticreviewoftheliteratureonpsychosocialfactorsrelatedto JFMS.SearcheswereperformedinthePubMed,Scielo,LILACS andMEDLINEdatabasesusingthe keywords“fibromyalgia”, “child”, “juvenile”, “primary fibromyalgia” and “syndrome” aswellasBoolean operators.ArticlespublishedinEnglish, PortugueseandSpanishbetween1985and2014on descrip-tive characteristics or factors associated with JFMS were selected.Theinitialsearchledtotheretrievalof108records. Following the exclusion of editorials, letters to the editor, abstracts from conferences, review articles on other top-ics, articles on fibromyalgia in adultsand articles focused on diagnostic tools rather than patients, 54 papers were selected. Twelve more articles were excluded because the focus was on treatment without taking into consideration the psychosocial characteristics of the subjects. Thus, 42
pediatric references and seven complementary texts were analyzed.
Prevalence
and
etiology
The diagnosis of JFMSremains the subject of debate with regard to whatcriteria touse1,6,7 (specifically, those ofthe AmericanCollegeofRheumatology8(ACR)orthoseproposed by Yunus and Masi9), the measurement ofthe force tobe appliedintheevaluationoftenderpoints,6,7,9–11 the defini-tion ofheadache7 andthemostadequateassessmenttools for the determinationofanxiety and depression. One sys-tematicreviewfromGermany7proposesthateventheterm “juvenilefibromyalgiasyndrome”shouldbediscardeddueto thelackofdiagnosticconsistency.Suchmethodological dif-ficultiespartiallyexplainthedifferencesinprevalencerates acrossstudies,whichrangefrom1%8to6%.4
geneticallyproven.RelativesofindividualswithJFMSreporta greaterdegreeoffatigue18andhavepoorsleepquality. More-over,studyingagroupof35individualswithJFMS,Roizenblatt etal.19foundthat71%ofthemothersalsohadfibromyalgia.
Characteristics
ThereisdebateintheliteratureregardingwhetherJFMSisan independentsyndromeorthejuvenileversionoffibromyalgia foundinadults.2,6,7,20–22Buslikaetal.4reportedthe sponta-neousremissionofsymptomsin73% ofpatientsevaluated aftera30-monthfollowup.Mikkellson3reportthatthe syn-drome persisted in only 26% of the patients evaluated at a one-yearfollow up. Both studies give an indicationthat the manifestation of JFMS differs from adult fibromyalgia, whichdoesnotgenerallygointoremission,23althoughtreated patientsoftenexperienceasignificantimprovementin func-tion.Inacaseseriesstudy,theauthorsfoundthatpatients withJFMSwhoabandonedtreatmentweretheoldest individ-ualsinthesampleandhadcharacteristicssimilartotheadult manifestationoffibromyalgia,therebydifferingfromthecases thatremainedintreatment.24Anumberofauthorsreport dif-ferencesbetweenadultsandyouths,suchasagradationof symptomsorastheresultoflongperiodswithouttreatment onthepartofadultswhosufferedwidespreadpainin child-hoodandadolescence.5,6,25,26Thus,theearlydetectionofJFMS isanindicationofabetterprognosis,2withsignificantgainsin qualityoflife20andfunctionalityforindividualswhoreceive adequatetreatment,whereasthosewithwidespreadpainthat arenottreatedadequatelyhaveagreaterchanceofdeveloping fibromyalgia.21
Analtered sleep pattern seems to bea common factor amongpatientswithJFMS.Inastudywithaone-yearfollow up,Mikkelsoon3foundthatallindividualsanalyzedhad trou-blesleeping.InastudyconductedinBrazil,theauthorsfound that 43% ofthe patients in the sample could not achieve restorativesleep.27Theauthorsofanotherstudy28foundpoor sleep quality among both individuals with JFMS and their parents.29Inastudyinvolvingpolysomnographyforthe eval-uationofsleepqualityamongpatientswithJFMS,theauthors foundthatthesubjectshadtroublefallingasleep,areduced totalsleeptime,non-restorativesleepandgreaterperiodsof awakeningthroughoutthenight;moreover,42%ofthesample exhibitedexcessivelimbmovementsduringsleep.
Kashikar-Zucketal.1proposedaconceptualmodelforthe understandingofJFMS,the centralfactors ofwhich are an alteredperceptionofpainandthenotionthatfibromyalgiais characterizedbyconcomitantpsychologicalandorganic fac-torsresultinginadiminishedcapacitytocopewithpain.This differentiatesthesyndromefrompsychosomaticdisorders,as thepatternofpainexpressioninfibromyalgiaisrelatively con-stantandpersistent,whereaspsychosomaticpaintendstobe lessconstant.
Psychological
aspects
of
JFMS
IndividualswithJFMShaveapoorerqualityoflife30 aswell asmoresymptoms ofdepression5,24,25,31 and anxiety24,25,32 thanyouthswithothertypesofchronicpain33and control
subjects, whichresults in agreater occurrenceof disease-related dysfunctional behavior and disability,34 greater absenteeism from school and more visits to healthcare services.27Onestudyfoundthat12%ofparentsoptforhome schoolingduetothefrequentpaintheirchildrenface,whereas only2%ofthegeneralpopulationoftheUnitedStateschoose this option; moreover,the mean number ofabsencesfrom schooltotals41daysyearlyamongindividualswithJFMS ver-susninedaysyearlyamongthegeneralpopulation.35
The discussion on the origins of JFMS needs to lead to the clarification of the relationship between physiolog-ical and psychological aspects. A number of authors have sought to characterize JFMS regarding these aspects, but fewstudiesofferagreaterunderstandingofthecausesand consequencesoftheaggravatingpsychologicalcomorbidities foundinyouthswhosufferfromwidespreadpain.Regarding the influenceof family in the development ofJFMS, stud-ies report concomitant symptoms in parents and children with fibromyalgia.19,22,36,37 For instance, a recent study on widespreadpainamongyouthsfoundagreaternumberof par-entswithpain,fibromyalgiaandmentalproblems.26However, nostudyhasyetestablishedtherelationshipofcausality.
Despite theevidenceofgeneticfactors,theinfluenceof parentsonthelearnedbehaviorofchildreniswidely recog-nizedandmaybeassociatedwithpoorfunctionalreactions topain, therebycontributingtothedevelopmentoffactors thatcontributetothediagnosisofJFMS,suchasanxietyand depression.Forinstance,thesimilarsleeppattern19,27among patientsandrelativesmaybeinfluencedbysocialaspectsor cohabitationconditionsthathavenotbeenevaluatedin stud-iesinvolvingpolysomnography.27,28
According to some studies, youths with fibromyalgia seem to come from families that are more anxious and disorganized,36,38 which may exert an influence on coping withday-to-dayproblems.Moreover,theparentsofsuch chil-drenhavemorepainandpooreremotionalrelationships37and tendtousehealthcareservicesmore.Otherexamplesofthe environmental influenceonthe developmentofbehavioral patternsamongyouthswithfibromyalgiaare foundinhow theseindividualsreact tofactorsthateithertriggerpainor resultfrompain.Astudyoncopingstrategiesinadverse situ-ationsfoundthatyouthswithJFMSusemoreproblem-focused avoidancestrategiesthanacontrolgroupandthesame cop-ingpatternwasfoundamongtheparentsofthesechildren.18 Siletal.39conductedastudyontheinfluenceofthe famil-ialenvironmentonthedevelopmentofJFMSandconcluded thatahighdegreeofparentalcontrolcanalsoleadtoahigher degreeofdepressionamongthese youthswithoutexerting aninfluenceonphysicalhealth.Thisseemstobeplausible, ashighlycontrolledenvironmentsleadtogreaterfeelingsof helplessnessand,consequently,depression.
temperament of affected individuals in dailyliving results in more behavioral problems than those found in healthy controls.36ItthereforeseemsthatindividualswithJFMSspend aconsiderableamountofenergyincopingwiththesymptoms ofthesyndrome,whichgivesthemasocialdisadvantagein comparisontoothers.
Adults41andyouths34,42 withfibromyalgiaseemtoshare thesamepersonalitytraitsanddysfunctionalproblem-coping strategies.Moreover,thereseemstobeafamilialenvironment thatisfavorabletotheoccurrenceofthiscondition. There-fore,onemayspeculatethat,althoughfibromyalgiamaynot haveapsychologicalorigin,itcausesareductioninthe func-tionalqualityoflifeofaffectedindividuals,18whichmaybea commonfactortothedevelopmentandexacerbationofthe syndrome.
Management
There is consensus in the literature that treatment for fibromyalgiashouldbemultidisciplinary1,2,6andfocusedon non-pharmacologicalinterventions,withtheuseof medica-tion onlyfor the controlof symptoms and comorbidities.7 Treatment should involve physical therapy,32 exercise43 and psychotherapy.44,45 Behavioral interventions are also effective33 andparental educationregardingthesymptoms ofJFMSfavorsanearlydiagnosis.46
Whileitisnotyetpossibletodeterminewhich psycholog-icalapproaches arethe mosteffective,Kashikar-Zucket al. havesuccessfullyemployedcognitive-behavioraltherapyfor thetreatment ofpatients46 withJFMSand the samegroup ofresearchersdemonstratedfunctionalimprovementinsuch patientsinarandomizedtrial,butwithoutafollow-up eval-uationtodeterminethelong-termeffectsoftherapy.47,48 He describestheclinicalpracticeofcognitive-behavioraltherapy astraining thepatientinmusclerelaxationanddistraction techniques,activitypacing,andcognitivestrategiestoreduce distressandencourageactivecoping,thisapproachleadtoa reductionindistressanddisability.
However, when the aim of cognitive-behavioral ther-apy was to increase the level of physical activity among youthswithJFMS,this approachproved less effectivethan educational interventions and neither approach improved patient adherence to such activities.49 Another study that employed cognitive-behavioral therapy for the treatment ofpain obtainedmoderate resultsinthe post-intervention and follow-up evaluations.24 However, the study cited had methodologicalproblems, suchasthe heterogeneityinthe age of the sample, which ranged from eight to 18 years and the older patients were the ones who abandoned treatment.
Conclusions
After the present review of the literature, the determina-tion of whether JFMS is a differentiated condition from fibromyalgiainadulthoodremainsundefined,asresearchers haveofferedevidencefavorabletobothpositions.Fromthe standpointofpersonalitytraits,similaritiesarefoundinthe
dysfunctionalwayadultsandyouthswithfibromyalgiacope with dailyproblemsand in thealtered perceptionof pain. However,theperceptionoftheseverityofthecondition indi-catesanimportantdifference,asyouthstendtocharacterize theirconditionaslesssevereand copewiththesymptoms better.
Onewayto demonstratethe possiblegradationofJFMS compatiblewithagewouldbethedevelopmentofstudiesthat differentiateyoungerandadolescentpatients.Thesamelogic appliestotheformsoftreatment,asmoststudiespublished thusfaraddresstreatmentinalimitedfashionandhavenot reachedconclusiveresults.Moreover,cohortstudiesand clin-icaltrialsonJFMSareneeded.
While fibromyalgiaisnotclassified asapsychiatric dis-order, its psychological and functional aspects should be treatedwithseriousnessandpsychologicalmethodsshould be employed that can help patients and family members altertheircopingstrategieswithregardtoday-to-day prob-lems,attenuatethedysfunctionalconsequencesofpainand fatigueanddiminishtheriskofcatastrophizingthat individ-ualssubmittedtoconstantpaindevelopinrelationtotheir surrounding environment. Thus, anindividualized psycho-logical evaluation ofpatientswith JFMSisessential to the definitionofthemostadequateformoftherapy,asthereis littleevidenceregardingthebestpsychologicalapproachin thesecasesandonlycognitive-behavioraltherapyiscitedin theliterature.
Conflicts
of
interest
Theauthorsdeclarenoconflictsofinterest.
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