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Qualitative study of self-reported experiences of infertile

women with polycystic ovary syndrome through on-line

discussion forums

Magali Authier, Caroline Normand, Maëva Jego, Benedicte Gaborit, Léon

Boubli, Blandine Courbiere

To cite this version:

Magali Authier, Caroline Normand, Maëva Jego, Benedicte Gaborit, Léon Boubli, et al..

Qualita-tive study of self-reported experiences of infertile women with polycystic ovary syndrome through

on-line discussion forums. Annales d’Endocrinologie, Elsevier Masson, 2020, 81 (5), pp.487-492.

�10.1016/j.ando.2020.07.1110�. �hal-02985377�

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ScienceDirect

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Original

article

Qualitative

study

of

self-reported

experiences

of

infertile

women

with

polycystic

ovary

syndrome

through

on-line

discussion

forums

Vécu

des

femmes

infertiles

atteintes

d’un

syndrome

des

ovaires

polykystiques

:

étude

qualitative

sur

les

forums

de

discussion

en

ligne

Magali

Authier

_,

_Caroline

_Normand

_,

_Maëva

_Jego

_,

_Bénédicte

_Gaborit

_,

_Léon

_Boubli

_,

Blandine

Courbiere

a_{Départementdemédecinegénérale,facultédessciencesmédicalesetparamédicales–Timone,Aix-MarseilleUniversité,27,boulevardJean-Moulin,13385}

Marseille,France

b_{Départementd’endocrinologie,diabèteetmaladiesmétaboliques,AP-HM,AixMarseilleUniversité,INSERM,INRA,C2VN,Marseille,France} c_{Pôlefemmes-parents-enfants,centreclinico-biologiqued’AMP–CECOS,AP-HMHôpitalNord/HôpitalLaConception,147,boulevardBaille,13005}

Marseille,France

d_{Aix-MarseilleUniversité,CNRS,IRD,IMBE,AvignonUniversité,Marseille,France}

a

r

t

i

c

l

e

i

n

f

o

PCOS

Polycysticovarysyndrome Infertility

Experience Forums

a

b

s

t

r

a

c

t

Objectives.–Tohighlighttheself-reportedexperiencesanddiseaseperceptionsofinfertilewomenwith polycysticovarysyndrome(PCOS).

Methods.–AqualitativestudyusinganinductivemethodwasconductedoninfertilewomenwithPCOS whosharedtheirself-reportedexperiencesonFrench-speakingon-lineforums.

Results.–785commentsby211womenon7forumswereanalyzed.Womencomplainedoflatediagnosis andlackofinformationregardingPCOS.PCOSandinfertilityshowednegativepsychologicalimpacton dailylife.Thisimpactappearedtobealleviatedbythesharingofknowledgeandexperienceenabledby theseforums.

Conclusion.–Theself-reportedexperienceofinfertilewomenwithPCOSisinterestingforhealth practi-tioners.ThepsychologicalimpactofPCOSandperceptionsofillnessappeartobeimprovedbysharing experiencesbetweenwomenwithPCOS,suggestingabeneficialsupportroleofonlinediscussionforums. ©2020ElsevierMassonSAS.Allrightsreserved.

Motsclés: SOPK

Syndromedesovairespolykystiques Infertilité

Vécu

ForumsInternet

r

é

s

u

m

é

Objectifs.–Explorerl’expériencepersonnelleetlesperceptionsdeleurmaladiepardesfemmesinfertiles ayantunsyndromedesovairespolykystiques(SOPK).

Méthodes.– Étudequalitative conduitechezdesfemmesinfertiles,ayantunsyndromedesovaires polykystiques,partageantleurexpériencepersonnellesurdesforumsInternetfrancophones.

Résultats.–Àtravers7forumsenligne,785commentairesprovenantde211femmesontétéanalysés.Les femmesseplaignaientd’unretarddiagnostiqueetd’unmanqued’informationsconcernantlesyndrome desovairespolykystiques.NousavonsobservéunimpactpsychologiquenégatifduSOPKetdel’infertilité surlaviequotidiennedecesfemmes.Cetimpactsemblaitêtreamélioréparleséchangesdeconnaissances etlepartaged’expériencespermisparlesforumsInternet.

Conclusion.–L’expériencepersonnelledesfemmesinfertilesatteintesdeSOPKestintéressantepourles professionnelsdesanté.L’impactpsychologiqueduSOPKetlesperceptionsdelamaladiesemblentêtre améliorésparlepartaged’expérienceentrelesfemmesatteintesdeSOPK,suggérantunrôledesoutien bénéfiquedesforumsdediscussionenligne.

©2020ElsevierMassonSAS.Tousdroitsr ´eserv ´es.

∗ Auteurcorrespondant.

E-mailaddress:magaliauthier@gmail.com(M.Authier).

https://doi.org/10.1016/j.ando.2020.07.1110

488 M.Authieretal./Annalesd’Endocrinologie81(2020)487–492 1. Introduction

Polycysticovary syndrome(PCOS) is a syndromecombining dysovulation,clinicaland/orbiologicalhyperandrogenism,and/or polycysticovariesonultrasound(2outof3criteriaaffirm diagno-sis,accordingtotheRotterdamcriteria)[1–4].PCOSisthemost commonendocrinedisorderinwomenofreproductiveage, affect-ing5–10%[5,6].TheconsequencesofPCOS,suchasobesity,acne, hirsutism,infertility,andmetabolicsyndrome,haveasignificant impactonthequalityoflifeofwomenwithPCOS[7–9].Increased cardiovascularrisk,hypertension,type2diabetesmellitus, dyslip-idaemiaandsomaticcomplaintssuchashirsutismareoftengiven prioritybyphysicians,whiletheveryfrequentpsychological suf-feringisoftenmisunderstood[10,11].

Theweb isa placefor free,openand anonymousexchange, liberatingpeople frompsychologicalbarrierssuchas inhibiting expressionoremotionsthatmightoccurface-to-face[12–14].In thiscontext,theInternetisanaccessiblesourceofinformationand iscommonlyusedforhealthresearch.Webuserssearchfor med-icalinformationinadditiontothatprovidedbytheirphysicians

[15,16].

Theobjectiveofourstudywastoexploretheself-reported expe-riencesanddiseaseperceptionsofinfertilePCOSwomenthrough Internetdiscussionsforums.

2. Methodology

Thecriterionforinclusionwastobeawomansufferingfrom bothPCOSandinfertility.PCOSwasaself-reporteddiagnosisby womenontheInternetforums.Womenwereconsideredinfertile accordingtothesecriteria:

• ifthewomansignifiedafailuretoconceiveaftermorethan12 monthsofregularunprotectedsexualintercourse(WHO defini-tion);

• ifthewoman,inthecontextofapregnancyproject,notedtheuse ofacyclicaltreatmentforinducingperiodsorifsheunderwent anovulationinductiontreatment;

• ifthewomanconsideredherselfinfertile,evenintheabsenceof thecriteriaabove.

Thisresearchdidnotrequirepriorconsentfromtheethics com-mittee,as it was conducted exclusivelyon thebasis of public, anonymousandretrospectivelycollecteddata.

Weconductedaqualitativestudywithaninductivethematic contentanalysisinspiredbythegroundedtheorydeveloped by GlaserandStrauss[17].Wechosetoconductqualitativeresearch, which aims todescribe in-depth phenomena in the context of everydaylife,whilequantitativeresearchaimstoquantifyor com-pareelements to identifygeneral rules [18]. Contrary to most studies,thebibliographicalanalysiswascarriedoutafterthedata analysistoavoidpredeterminedideasduringtheanalysis.

Thefirststageofthestudywastoanalysehundredsof com-mentson French-speaking Internet forums concerninginfertile femaleswithPCOS.Theopen-accessFrench-speakingforumswere selectedusingtheGooglesearchengineusingthefollowing key-words: “forum” or “opinion” and “PCOS”. The forums studied wereallodocteur,journaldesfemmessanté-médecine,doctissimo, mamanpourlavie,magicmaman, pmafertilité and forum.fiv. The searchwasdeliberatelylargeanddidnotcontainkeywordsrelated toinfertilitytoreducetheriskoftheexclusionofdiscussionsby thesearchengine,astheselectionofrelevantdiscussionsand com-mentsweremadebytheauthor.Theanalysisofthecommentsled totheemergenceofaclassificationsystemofcodesandcategories. Simultaneously,a secondphysicianperformedadoublereading

(MAandCN),whichmadeitpossibletovalidatethecodesfound incommontoreducethesubjectivityofthestudy.Data satura-tionwasreachedafterapproximately600comments.Theanalysis ofapproximately150additionalcommentsconfirmedtheabsence oftheemergenceofnewcodes.Thetranscriptionofthedatawas carriedoutby thesoftwareN Capture®.Dataanalysiswas per-formedusingthequalitativeresearchsoftwareNVivo12Pro(QSR International®,Victoria,Australia).Thepredominantthemeswere exploitedandclarifiedtoformthecontentofthisarticle.The orig-inalquoteswereinFrenchandhavebeentranslatedintoEnglish bytheauthor.

Thesecondstagewastocarryoutaliteraturereviewtocompare theelementsfoundwiththebibliographicaldata.

3. Results

Atotalof785commentswereanalysedfrom211womenon sevenInternetforums.Importantpsychologicalsufferingwith anx-ietyand emotionaldistress wasobserved,which appearstobe relatedtolowknowledgeofthedisease.

3.1. Diagnosticdelayandasyndromethatishardtounderstand ThelevelofunderstandingofPCOSappearedtobelowamong infertileInternetuserswithPCOS.Adelayindiagnosiswasnoted bymanyofthewomen.Thisissuggestedtobethecauseofhaving multipleconsultationsandswitchingdoctorsatthebeginningof thesearchforanexplanationoftheirproblems.

Despiteitsfrequency,thewomen werenotawareofanyone whohadPCOS,exceptforthosewithafamilyhistoryofPCOS.As aresult,astrongfeelingofalonenessemergedfromthewomenin theanalysis.TheseelementssuggestedthatPCOSwasadiseasenot knownbythegeneralpopulation.

Thewomenrequestedexplanationstounderstandtheir pathol-ogy.However,thequantityandcomplexityofinformationgiven duringthemedicalconsultationseemeddifficulttointegrateinthe beginning,compoundedbythemultipleordersforadditionaltests onspecificdaysofthecycle.Sometimes,incontrast,theyfeltlike theyhadnoinformationaboutthediseasewhentheycameoutof theconsultation.

Alackofunderstandingofmechanismsofthediseaseandthe modeofactionofthedrugsprescribed,includingmetformin, hin-deredadherenceandcompliancetotreatment.Oneofthepatients’ reflexeswastoconsulttheInternetinsearchforadditional infor-mationabouttheirdiseaseorthetreatments.Atfirst,theygave theimpressionofaddressingworryingexplanationsthattheydid notfullyunderstandandreportedthatthoseexplanationswere asourceoffearandpanic.Somecommentsevenconveyedfalse information,suchasthenotionthatPCOScouldbeduetoanoverly strongdesiretohaveachild,thatitcouldbeduetostress,that itwasamalformation,orthatthediseasewasduetoeggs stick-ingaroundtheovaryafterovulation.However,inasecondround, Internet users appreciatedreceivingfurtherexplanationsabout theirparticularcasesonmedicalwebsitesorfromotherwomen. Theywereveryrelievedtofindpeoplewithsimilarexperiences ontheforums,which reducedtheirfeelingsofloneliness. Some ofthemexpressedthewishtogettogetherandtobeabletomeet otherInternetuserstointeractfacetoface.Thesharingexperiences werehighlyappreciated,satisfyingtheirdesireforinformationand reducingapprehensionanduncertainty(Table1).

3.2. PsychologicalimpactrelatedtoPCOS

Themostconstantsymptomatologyappeared tobean anxi-etydisorderandemotionaldistress.Internetuserswereinitially stressedafterthediagnosisofPCOS.Thisfearseemedtobelinked

Table1

Excerptsaboutdiagnosticdelayandasyndromehardtounderstand(translatedfromFrench).

Categories Exampleofverbatim Numberof

verbatim Diagnosticdelay “In2005,myhusbandandIdecidedtohaveachild...Istoppedthepill

and2yearslater,stillnothing.Wewentfromphysiciantophysician andtoageneralpractitioner,anendocrinologist,andseveral gynaecologists,withtheanswer‘Ma’am,youaretoofat!!!’Therefore, [Iwas]intearsaftereachvisit...untilIwassenttoTHEgynaecologist, wholooksatmeandsays,‘YoumusthavePCOS’.Ihadanultrasound like2dayslater,showing20cystsoneachovary...”

21

Isolationfeeling “Ifeltalonewithmyhusbandinmymisadventure,butasIreadall yourstories,Irealizedthatit[PCOS]affectsalotmorepeoplethanI thought.”

12

Lackofunderstanding “Whatnobody’sbeenabletoexplaintomeiswherethisdystrophy comesfrom”;

“IwenttoagynaecologisttotreataninfectionandshetoldmeIhad PCOSwithnofurtherexplanation.”

72

notonlytotheunknownandthelackof knowledgeaboutthis diseasebutalsototheinformationtheygatheredduringthe consul-tationoftheannouncementorontheInternet,inparticular,thefear ofnotbeingabletohavechildren.Theywerethenworriedabout furthertests,suchaspainduringhysterosalpingographyandthe sideeffectsofovulationinductiontreatmentssuchasclomiphene citrate.Eachsymptomwasanalysedandcausedanxietyaboutits meaning,withthewomenoftenimaginingtheworst:metrorrhagia asasignofmiscarriageorectopicpregnancyandabdominalpainas asignofovarianhyperstimulation.Theabsenceofsymptomsalso seemedtobedisturbingtothemandmeantintheirmindsthatthe treatmenthadfailed.Forthosewhowereabletoachievea preg-nancy,anxietycontinuedwiththefearofmiscarriageorectopic pregnancy.

Thelongmedicalhistory andinfertilityofthesewomen,the failureofthetreatmentsandthemiscarriagesweresourcesof dis-couragement,disappointmentandfrustration.Forsome,thegoalof gettingpregnantbecamearealobsession.Allofthiscontributedto guiltandlowself-esteemassociatedwithnotbeingabletobecome pregnant.Psychologicaldistresswasveryfrequentlyfound,along withsadnessandcrying,whichwentasfarastheexpressionof suicidalideationforonewoman.

In additiontothemedical consultations, thewomen hadto undergomanytests(repeatedultrasoundsandbloodtests),which requiredasignificantamountoftimeintheireverydaylives.In addition,there wasa feelingofthemedicalizationof their pri-vatelife and alossof intimacy.Their intimacywasaffectedby theschedulingofsexualintercourse,which,whencombinedwith thestressoftheirmedicalsituation,ledtoharmfulpsychological pressure(Table2).

3.3. Difficultiesexperiencedduringthemedicalcourse 3.3.1. DifficultiesspecifictoPCOS

Theissueofweightwascentralamongthedifficultiesfeltby PCOSinfertilewomen.Guilt-blaming,pessimistic,andeven mock-ingremarkswerereported,implyingpoorinvolvementofwomen intheirweightlossprocess.Thissortofphrasingwasverybadly experiencedbythewomen,whofeltverystressedandevenmore discouragedafterthemedicalconsultations.Inaddition,the med-icalhistory ofthese women,who weregiven differentmedical opinions,oftenresultedinquestioningthephysician’sassessment. EventhetruthfulnessofthediagnosisofPCOSwasdoubtedbecause ofpreviousdiagnosticuncertainty.Alltheseelementsseemedto contributetoarealdivisionbetweensomephysiciansandwomen. Thephysicianhadtobesupportive,reassuring,confidentand opti-mistic.Thesepoints,normallyobvious,didnotseemtocorrespond

totheexperiencesofthesewomen,pointingtopossibleareasfor improvementintherelationshipsbetweensomephysiciansand womenwithPCOS.

Additionaltestsmustbeperformedatthebeginningofthe men-strualcycle.Amajorproblemthenappearedthatwasnotalways anticipatedbythephysicians:womenwithPCOSmostoftenhave oligo-anovulationandthereforeamenorrheaorspaniomenorrhea. Severalmonthsoftenpassedbeforethesetestswereadministered ifnotreatmentwasgiventoinduceperiods.

Theproposalof a carestrategy explainingthedifferent suc-cessivestepsofthetreatmentthatcouldbeusedallowedthem toprojectthemselves and tohave a lifeplan. Active participa-tionmotivatedthesewomen.Themainissuesinwhichtheycould becomeinvolvedwerediet,lifestyle,andweightlossforthosewho wereoverweight.Empoweringthemonthesuccessoftreatment improvedtheirinvolvementanddecreasedtheirfeelingsof passiv-ityandexpectation(Table3).

3.3.2. Badexperiencesofinfertilitynotspecifictowomenwith PCOS

“Waiting”wasthemainburden.Infertilewomenbegan wait-ingforaspontaneouspregnancy.Whentheydecidedtoseekhelp, theyoftenfacedlongdelaysinappointments,uptoseveralmonths. Oncethediseasewasfinallydiagnosed,therighttreatmentwas putinplace,menstruationandovulationresumed,andanewwait beganwiththehopeofapositivepregnancytest.Everydaywas experiencedasendless.

Mostofthetime,Internetusersweredeepintothefeelingof uncertainty.Itwasimpossibleforthemtoprojectthemselvesinto theyearstocome,orevenintothenextmonths.The interpreta-tionoftheirsymptomswasdifficultbecauseofthesimilarityof thesignsofpregnancywiththesideeffectsofovulationinduction treatments.

Womenneeded support and encouragement.Their partners wereoftenlessstressed,abletostepbackand abletobemore positive and optimistic, which could have a reassuring effect. Conversely,some womensuffered fromtheirhusband’slackof involvementandfeltthathedidnotadheretothecareplan,which increasedtheirdoubtsand anxiety.Inadditiontothefeelingof misunderstandingbytheirrelatives,thesamewomenhadgreat dif-ficultyexpressingthemselvestowardstheirfamily,mostofwhom werenotawareoftheirpathology.

Theywerealsoseekingreinsuranceontheforums.Messagesof encouragementandpositivetestimoniesfromotherwomenonthe webseemedtohaveamotivatingandstimulatingeffect,providing hopeandcomfort(Table4).

490 M.Authieretal./Annalesd’Endocrinologie81(2020)487–492

Table2

ExcerptsaboutpsychologicalimpactrelatedtoPCOS(translatedfromFrench).

Categories Exampleofverbatim Numberofverbatim

Anxietydisorder “It’sscaryIknow,Iwasonthelookoutforthesepains,[...]incaseof ectopicpregnancyormiscarriage[...]butit’snormal,it’sligamentpain. However,dear,it’sonlythebeginning,thetimeseemslongand frightening,yousee,that’swhatIwastalkingabout,thatwethinkthat oncewehaveour++wewillberelieved,butNOTatall!Because afterwardsit’stheanguishof“whatifitdoesn’thold”.[...]I’m refrainingfromgoingtotheemergencyroomonthepretextofpainso Icangetanultrasound”;

“SoI’malittlescaredtogainweightwithallthesetreatments...Thelife withPCOSisnotfun,butyouhavetodealwithit...”

92

Emotionaldistress “Forme,PCOSeatsmylifeaway”;

“Ialwaystrytohope,butit’shard...I’mseverelydepressed”

193 Privacyimplications “Itisarealobstaclecourse,therearestillexamstobepassed[...],and

papers,andanunfailingavailabilityforbothofus”;

“PCOSanditssymptoms,weightgain,moods,thentheinfernalspiral ofdoctors,medically-assistedprocreation,treatments...”

89

Table3

ExcerptsaboutdifficultiesspecifictoPCOS(translatedfromFrench).

Categories Exampleofverbatim Numberofverbatim

Weightissue “Oneday,oneofthe5gynaecologistsImettoldmethatifIdidnotlose atleast30kg(66pounds)Iwouldnotbeabletohaveachild” “Andthentheycameupwiththissentencethatmakesmesoangry: Loseweight!”

29

Questioningphysician’sassessment “ShetoldmethatIhavePCOSdespitemyperiodsbeingregular,Iwant youropinion”

50 Menstrualcycle

adjustment

“Ihadnothing[noperiod]for9monthsandtheycamebackonly becauseIwasgivenDuphaston[dydrogestrone],otherwiseImight stillbewaiting.

Theyliketotortureus”

11

Womeninvolvement “AndinthemeantimeIgiveallIcanabouthealthylivingandsport becauseitisallIcando”

3

Table4

ExcerptsaboutdifficultiesaboutinfertilitynotspecifictoPCOS(translatedfromFrench).

Categories Exampleofverbatim Numberofverbatim

Expectationand uncertainty

“PCOSisamess,youneverknowifitworkedornot.Furthermore,with thetreatmentswehave,thesideeffectscastdoubtonus...Inshort,it isapuzzle.”

170

Familysupport “Mywonderfulhusbandsupportedmeandcheeredmeup.” 32

Difficultytoexpress “Mymother-in-lawwhowouldliketoomuchtobegrandmotherbutI donotknowhowtotellheritistoohard”

19 Internetforumsupport “Youareintherightplacetocomeandtalkaboutyourproblems,your

feelings,weareallheretosupporteachotheranditfeelsgood.Formy part,IwasluckythatthetreatmentsworkedbutIstayontheforumto supportyouandtotellyoutherest,becauseforthosewhoknowme, theyhavebeenthereformefromthebeginning”

115

4. Discussion

WeobservedastrongpsychologicalimpactamongPCOS infer-tilewomenwhosharetheirexperienceindiscussionforums.We pointedouttheirdifficultyinunderstandingwhatPCOSis.

First,therecouldbeabiasregardingcertaininclusioncriteria: theself-reportednatureofthediagnosisofPCOSandthecriterion ofinfertilityreportedbywomen,whichissubjective.

Thedifficultyininterpretingthecommentswasthepresence ofmanycommonfeaturestoinfertilewomenandPCOSwomen. OnelimitationofthisstudyisrelatedtothespecificityofthePCOS populationamonginfertilewomenandtopotentialsignificantbias inducedbyourmethodology.Wereliedonaqualitativeapproach, consideringherethatimprovedunderstandingofcomplexissues ismoreimportantthangeneralizabilityofresults[18].Thewomen consultingtheInternetforumsareprobablyunconvincedbytheir managementandarepossiblytheoneswhounderstandtheleast ofthemedicalinformationreceivedbytheirphysicianregarding

PCOS.For thesereasons,theymaynot berepresentativeofthe generalpopulation.However,webelievethatthesewomenwho needtosharetheirself-experienceinInternetforumsdeserveto beconsidered.

4.1. Interestofonlinecommunitiesinchronicpathologies

TheFrenchpopulationconductinghealthresearchonthewebis mainlycomposedofmiddle-agedwomen.Themajorityofwomen who expressedthemselvesonthePCOS forumswerethemost oftenunsatisfiedoranxious,whichconstitutesaselectionbias.Ina studyofpopulationsconductingmedicalresearchontheInternet, Renahyetal.reportedthatpatientswerenotsatisfiedwithmedical consultationsduetoalackofexplanationsfor75%ofthemanda lackoflisteningfor65%ofthem.Patients’recourseisthereforeto obtainmedicalinformationviatheInternet.However,the reliabil-ityoftheinformationretrievedishighlyvariable,andpatientsoften havedifficultyselectingrelevantsources[15].Forumsareawayto

gatherandshareexperiencethatcouldincreasethe understand-ingofpathology,includingwomenwithPCOS[19].However,the answerstothequestionsthatInternetusersaskeachotherwere notalwaysaccurate,constitutingalimitationtotheimprovement inknowledge.First,theInternetcouldbeasourceofanxiety regard-ingtheinformationfound[16].Nevertheless,appropriationoftheir illnessbenefitedfromtheuseoftheInternet,wheretheycould learnpassively,byreadinginformation,andactively,by interact-inginonlinecommunities.KnowledgeandunderstandingofPCOS appearedtodecreasewomen’sanxiety,increasetheirinvolvement andcompliance,andthusimprovetheirqualityoflife[20].Onthe otherhand,PCOShasneverbeenthesubjectofnationalinformation campaignsinFrance,suggestingthatthisdiseaseispoorlyknown bythegeneralpublic,eventhoughthecardiovascularmorbidityof PCOSisarealpublichealthissue[21].

4.2. Listeningandacknowledgingdifficulties

Morethanone-thirdofwomenwithPCOSarereportedtohave a depressive syndrome, with a five-fold increase in the risk of depressioninobesewomencomparedtothoseofnormalweight

[22,23].Infertilityaloneisalsoacauseofsufferingandstressforthe individualandthecouple,withasignificantincreaseinthe preva-lenceofdepressivesyndromecomparedtofertilewomen[9,24]. PCOSwomenalsosufferphysicallyfromapoorbodyimagelinked totheconsequencesofthedisease,suchashirsutismand over-weight.Thesetwoaspectshavebeentakenintoconsideration,and anassessmentofthepsychologicalstateissystematically recom-mendedforwomenwithPCOS[25–27].Despitethis,astudyby Ellisetal.showedthatpsychologicalassessmentwasnotcarried outinpractice,incontrasttothescreeningforsomatic patholo-giessuchasdiabetesandhighbloodpressureinthefollow-up[11]. Comprehensivepsychologicaltherapieshaveshowngoodresults onpsycheandprocreation,suggestingtheimportanceof improv-ingpsychologicalwell-beinginthesuccessofthepregnancyproject

[28].

Twostudiesanalysedthelinkbetweenpsychologicalsupport andInternetforums.Thefirststudyexaminedthesocialsupport providedbyonline communitiestoJapanesemothersfor child-care.Miyataetal.showedthatmotherswhoactivelyparticipated inforumsreceivedmoresupport,withanincreaseinself-esteem andadecreaseintheriskofdepressionwithshort-andlong-term benefitsontheirsocialrelationshipsinreallife[12].Sharfetal. examinedanonlinecommunityofwomenwithbreastcancer.They showedthattheinformationexchangedenabledwomentomake moreinformeddecisionsandprovidedasupportnetworkthatwas availableatanytimeandfromanyplace,unlikemedical consulta-tions[13,29].

Thequalitativemethoddoesnotallowcomparisonbetweentwo populations.However,it might beinterestingtoexplore forum userswithanother causeof infertilityor PCOSwomen withor withoutthevariable“forumuser”.

4.3. Diagnosticdifficultiesandheterogeneityofmedicalpractices InitialdiagnosticwanderingregardingPCOSisamajorconcern intheexperienceofwomenwithPCOS.Gapsexistinthisarea,as weobservedintheanalysisofthecomments. Inanonline sur-veyof1385womenwithPCOS,Gibson–Helmetal.examinedtheir satisfactionwiththeinformationreceivedatdiagnosisandtheir concernsatthetimeofthesurvey.Theyshowedsimilarresults, highlightingadiagnosticdelayandaninadequacyofthe informa-tiongivenaboutPCOSreportedbywomen.Inparticular,morethan athirdofthewomeninterviewedreportedadelayofmorethan twoyears,andatleastthreehealthprofessionalsconsultedbefore thediagnosisofPCOSwasestablished[30].Aretrospectivestudy

conductedbyMarchetal.waslookingforcriteriaofPCOSthrough interrogation,clinicalexaminationandfurthertestsin728women fromthegeneralpopulation,agedfrom27to34years.Theyshowed that,accordingtotheRotterdamcriteria,68%ofwomenwithPCOS wereundiagnosed[31].Theresultsofthisstudyareprobably con-sistentbutshouldbeinterpretedwithcautionbecauseofthesmall sizeanditmonocentricnature.IfthediagnosisofPCOSisnotmade despiteamedicalcomplaintattributabletothedisease(hirsutism, cycledisorders,infertility),itseemslegitimatetoquestionthelack ofsufficientmedicaltrainingonthispathologyinFrance,aswas foundintheUnitedStatesbyHoyosetal.andChemerinskietal.

[32,33].

Theinternationalconsensusonthediagnosisandmanagement ofPCOS,publishedin2018,shouldbebetterknownand widely disseminated among health professionals, particularly general practitioners,whoshouldbethecentralelementinthe manage-mentofwomenwithPCOS[25–27].Allhealthprofessionalsshould beawareoftheimpactofPCOSonsexlife,bodyimageand relation-ships.Moreover,theyhavethemissiontoinformthewomenthat themetabolicsyndromewillnotdisappear,resultingindifficulty losingweightdespitetheirefforts,andpreparethemfora poten-tialdelayingettingpregnant.Betterknowledgeofthisconsensus wouldmakeitpossibletohomogenizepracticesandcorrectthe divergencefactorbetweenphysicians,whichisasourceofanxiety andconfusionforpatients[34].

5. Conclusion

InfertilewomenwithPCOSwhoconsultInternetforumsappear tosufferfromlow understandingof thedisease,affectingtheir qualityoflife.Themedicalinformationprovidedtothesewomenis perceivedasinadequateorinsufficient.Moreover,anxietyand psy-chologicaldistress,whichareverycommoninwomenwithPCOS, arefrequentlyomittedbyhealthpractitioners,despiterecent rec-ommendationsfortheirsystematicresearch.Theuseofdiscussion forumsappearstobebeneficial,representingasourceofsupport andexperientialknowledgesharing.

Disclosureofinterest

Theauthorsdeclarethattheyhavenocompetinginterest. References

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