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This is an Open Access document downloaded from ORCA, Cardiff University's institutional repository: http://orca.cf.ac.uk/102876/ This is the author’s version of a work that was submitted to / accepted for publication. Citation for final published version: Santer, M., Chandler, D., Lown, M., Francis, Nicholas A. and Muller, I. 2017. Views of oral antibiotics and advice seeking about acne: a qualitative study of online discussion forums. British Journal of Dermatology 177 (3) , 751 -757. 10.1111/bjd.15398 file Publishers page: http://dx.doi.org/10.1111/bjd.15398 <http://dx.doi.org/10.1111/bjd.15398> Please note: Changes made as a result of publishing processes such as copy-editing, formatting and page numbers may not be reflected in this version. For the definitive version of this publication, please refer to the published source. You are advised to consult the publisher’s version if you wish to cite this paper. This version is being made available in accordance with publisher policies. See http://orca.cf.ac.uk/policies.html for usage policies. Copyright and moral rights for publications made available in ORCA are retained by the copyright holders.

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Page 1: Oral antibiotics for acne online REVISED final antibiotics for... · 2018. 6. 8. · teenagers have acne that may require medical treatment.2 The main impact of acne is psychological,

This is an Open Access document downloaded from ORCA, Cardiff University's institutional

repository: http://orca.cf.ac.uk/102876/

This is the author’s version of a work that was submitted to / accepted for publication.

Citation for final published version:

Santer, M., Chandler, D., Lown, M., Francis, Nicholas A. and Muller, I. 2017. Views of oral

antibiotics and advice seeking about acne: a qualitative study of online discussion forums. British

Journal of Dermatology 177 (3) , 751 -757. 10.1111/bjd.15398 file

Publishers page: http://dx.doi.org/10.1111/bjd.15398 <http://dx.doi.org/10.1111/bjd.15398>

Please note:

Changes made as a result of publishing processes such as copy-editing, formatting and page

numbers may not be reflected in this version. For the definitive version of this publication, please

refer to the published source. You are advised to consult the publisher’s version if you wish to cite

this paper.

This version is being made available in accordance with publisher policies. See

http://orca.cf.ac.uk/policies.html for usage policies. Copyright and moral rights for publications

made available in ORCA are retained by the copyright holders.

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1

Viewsoforalantibioticsandadviceseekingaboutacne:a

qualitativestudyofonlinediscussionforums

Runninghead:Onlinediscussionforumsforacne

Words:3574(previously2912)

Tables:1

Figures:2(1figureand1box)

MSanter1,DChandler

1,MLown

1,NAFrancis

2,IMuller

1

1. UniversityofSouthampton

2. CardiffUniversity

Correspondingauthor:

MiriamSanter

PrimaryCareandPopulationSciences

UniversityofSouthampton

AldermoorHealthCentre

AldermoorClose

SouthamptonSO165ST

02380241019

[email protected]

Fundingsources:none

Conflictofinterest:nonedeclared

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2

What’salreadyknownaboutthistopic?(70words,currently66)

• Acnevulgarisisverycommonandcanhaveconsiderableimpactonqualityoflife.

• Althoughsomeinformationisavailableaboutpatients’viewsoforalisotretinoin,littleis

knownaboutviewsandexperiencesofthemostcommontreatmentsforacne,including

oralantibiotics.

• Onlinediscussionforumsareanincreasinglycommonsourceofinformationabout

healthconditions,yetweknowlittleabouttheadviceexchangedaboutacneonline.

Whatdoesthisstudyadd?(70words,currently67)

• Wefoundverydiverseviewsaboutoraltreatmentsingeneralandoralantibioticsin

particular.

• Sourcesoffrustrationincludedthedelayedonsetofactionofantibioticsforacne,

perceptionsofonlytemporaryeffectivenessandadverseeffects.

• Adviceonsomediscussionthreadsseemedinappropriatebecausetheseverityofacne

wasnottakenintoaccount;advisingsunshineforsevereacneordermatologyreferral

for‘somespots’forexample.

Whataretheclinicalimplicationsofthework?(70words,currently60)

• Peopleseekinginformationaboutacneinonlineforumsarelikelytofindbewildering

advicewithpotentiallynegativeaswellaspositiveimpacts.

• Cliniciansprescribingoraltreatmentsforacneneedtoprovideinformationandsupport

aroundthedelayedonsetofaction.

• Healthprofessionalscanhelpavoidconfusionbysignpostingpeoplewithacnetowards

reliable,evidence-basedresourcestoaccessoutsidetheconsultation.

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ABSTRACT

Background

Acnevulgarisiscommonandcansignificantlyimpairqualityoflife,yetlittleisknownaboutpatients’

understandingofacneanditstreatments.Oralantibioticsarewidelyusedforacne,despiteconcerns

aboutantibioticresistance.Peopleareincreasinglyturningtoonlinediscussionforumsforadvice

andinformationonthesesitesmayinfluencehealthbeliefsandtreatmentadherence.

Objective

Toexploreunderstandingsabouttheuseoforalantibioticsforacneandadvicesharedamongst

messagespostedononlineforums.

Methods

Wesystematicallysearchedforonlineforumsandidentifiedfourwhereacnewasfrequently

discussed.Discussionthreadsrelatingtooralantibioticswereanalysedthematically.NVivo11

facilitateddatahandling.

Results

Weextracted136pagesofdata;65discussionsamongst294participants.Wefoundawiderangeof

perceptionsaroundeffectivenessofantibioticsforacneandconcernsaboutadverseeffects.The

delayedonsetofactionofantibioticswasasourceoffrustrationandcompoundeddissatisfaction

withhealthcareproviders,whopeopleperceivedas‘fobbingthemoff’withprolongedcoursesof

ineffectivetreatment.Advicerangedfromcostlycleanserstowhentoaskfor,orinsiston,referral.

Postsrelatedtoawiderangeofseverities,from‘spots’tosevereacne,whichmaymakeitconfusing

foruserstoassessappropriatenessofinformation.

Conclusions

Onlineforumsofferopinionsthatcouldbeconfusingorleadtoearlyabandonmentoftreatments,

challengingconsultationsandpatientdissatisfaction.Usersexpressedfrustrationaboutthedelayed

onsetofactionofantibioticsforacne,perceptionsofonlytemporaryeffectivenessandadverse

effects.

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BACKGROUND

Acnevulgarisisaverycommoncondition.Somedegreeofacneaffectsalmostallteenagersandis

moderatetoseverein15to20%,oftenpersistingtoadulthood.1Itisestimatedthat30%of

teenagershaveacnethatmayrequiremedicaltreatment.2Themainimpactofacneispsychological,

withincreasedriskofdepressionandsuicide1,2andpsychosocialdisabilitysimilartothatseenin

conditionssuchasasthmaanddiabetes.2

Over3%ofpeopleaged13to25yearsconsultforacneinprimarycareintheUKeachyear.3

Guidelinessuggeststep-wisetreatmentinvolving(i)singleagenttopical,(ii)combinationtopical,(iii)

oralantibioticsplustopicaltreatment.2However,oralantibioticsarewidelyprescribedforacnein

theUK,4despiteconcernsaboutthedevelopmentofantibioticresistance.

5,6Itisnotclearwhether

thisover-useoforalantibioticsisduetopatientpressureordoctorpreference.

Qualitativeresearchhasexploredtheimpactonadultsandyoungpeopleoflivingwithacne7,8and

onpeople’sviewsoforalisotretinoin9,yetlittleisknownaboutpeople’sviewsofotheracne

treatments.Thismattersbecausehealthbeliefshaveastronginfluenceontreatmentadherence,10

whichisacommonbarriertoeffectivetreatmentinacne.1

In2015,78%ofadultsinGreatBritainusedtheinterneteverydayoralmosteveryday.11Almost

50%ofadultscurrentlyusetheinternettoaccesshealthinformation,afigurewhichcontinuesto

rise.11Onlineforumsarediscussionsitesthatallowuserstocommunicatetheirpersonalexperiences

throughasynchronouswrittencommunicationandareincreasinglybeingusedtoseekinformation

fromotherswithsimilarhealthissues.12Onlinediscussionforumsareoftenmorepopularthanstatic

websitesbecausepeoplevaluefirst-personaccountsandfeelsupportedbyothersintheonline

community.12Onlineforumsprovidequalitativeresearcherswitharichandvaluablesourceofdata

aboutusers’perspectivesandexperiencesandtherehasbeenanincreaseinqualitativeresearch

exploringonlineexchangesrelatingtoarangeofhealth-relatedconditions.13-15

Onlineforumsappeartoimpactbothpositivelyandnegativelyonhealthbehaviours,forinstance

throughhelpingpeoplefindinformationandfeelsupported,influencingbehaviour(throughreading

others’experiences)andinforminghowtonavigatehealthservices(includingaskingquestionsof

healthprofessionals).12Exchangesinonlineforumsgenerallyhaveapermanence,providing

searchableinformationavailabletofutureforumuserswithapotentialforimpactonmanyusers.16

ArecentBMJeditorialcommentedthat,‘Theconversationspatientshaveintheironline

communitiesmustbebroughtclosertotheconversationscurrentlyconductedamonghealth

professionals.’17Onewayofworkingtowardsthisisforhealthprofessionalstogainabetter

understandingoftheconcernsandviewssharedinonlinecommunities.

Qualitativeexplorationofdiscussionsaboutacneinonlineforumscanallowinsightintoforumusers’

viewpointsandanappreciationofadvicethattheymayhavereceivedpriortoconsulting.Thisstudy

focussesonperceptionsoforalantibioticsasthesearewidelyusedforacneandthereareconcerns

abouttheimpactofthisonrisingantibioticresistance.5Wethereforeaimedtoinvestigate

understandingsandconcernsabouttheuseoforalantibioticsforacneandexplorethenatureof

adviceseekingforacneamongstpeoplewhohavepostedmessagesononlineforums.

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METHODS

Thisqualitativestudysoughttoexploremessages(andtheirresultantdiscussions)aboutoral

antibioticspostedbypeoplewithacne,andtheircarers,inUK-baseddiscussionforums.

Dataretrieval

InitialscopingreviewofonlineresourceswascarriedoutinJune-July2016byenteringtheterms

‘acne’,‘acneantibiotics’,‘teenageacneantibiotics’and‘acneforum’intothreedifferentcommonly-

usedsearchengines,usingthe‘UKresultsonly’option,andlookingatthefirst100hits.Wefound

discussionoforalantibioticsforacnewithinacne-specificforums,forumsforothermedical

conditionsandgeneralmedicalforums,parentingforums,andgeneraldiscussionforums.Only

activeforumsconsideredtobeinthepublicdomainwereincludedinthisstudy.Forumswere

excludediftheyrequiredregistrationtoviewposts,containedfewerthanthreerelevantthreadsor

hadnothadanypostswithinthelastsixmonths.Therewere12remainingforums,ofwhichwe

selectedfourinordertoyieldamanageableamountofdata.Wechosefourforumsofferingdiverse

perspectives,choosingoneacne-specificforum,onegeneralforum,onegeneralmedicalforumand

oneparenting-focusedforum,selectingtheonewiththegreatestofnumberofacne-relatedposts

fromeachcategory.AllfourlistedaUKaddress.

Duetovariationintheavailabilityandcapabilitiesoftheinternalsearchfunctionsoftheselected

forums,auniformsearchstrategycouldnotbeapplied.Theresearcher(DC)familiarisedhimself

witheachforumtotailoranappropriatesearchstrategy(Box1).

Postsweredefinedasrelevantiftheyincludedviewsorexperiencesoforalantibiotics,orwerepart

ofaconversationthatincludedthese.Threadswereinitiallyonlyincludediftheyhadbeenposted

duringorafter2010,butwithinthesethreadsallrelevantpostswereincludedregardlessofdate,in

ordertoretaincontextforthelaterposts.InJuly2016,90pagesofdatawerecollectedfromthe

fourselectedforums,butreviewofthesesuggestedthatmoredatawereneededtosaturatethe

mainthemes.Anadditional46pageswerethereforecollectedinearlyAugust2016(Figure1).

Onceextracted,threadswereanonymisedanduniqueidentifierswereassignedtoeachthreadand

toeachusername.TheanonymiseddataweretransferredtoNVivo11tofacilitatedatahandling.

Dataanalysis

Aninductivethematicanalysis18identifiedcommonthemesrunningthroughthediscussions.Coding

beganfollowingreadingandre-readingofthedata.Asampleofthediscussionswerecodedlineby

line(DC)inordertoproduceaninitialcodingframe.Thiswasdiscussedamongsttheresearchteam,

initialthemesandsubthemeswereidentifiedandadraftcodingmanualwasproduced.Thismanual

wasiterativelydeveloped(DC,IM,ML,MS),andthenusedtointerrogatethedataforthemesand

subthemesandtosearchfordisconfirmingcases.Asanalysisprogresseditbecameclearthat

consideringthreadsinthecontextoftheinitialpostwasnecessarytocontextualisecommentsand

datawasre-readandcodedinthisway.

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Ethicalissues

ApprovalwasgrantedbyUniversityofSouthamptonFacultyofMedicineEthicsCommittee

(reference22431).Thisstudyconsidersonlineforummessagesthatcanbeviewedwithout

registrationtobelocatedwithinthepublicdomain,inlinewithguidelinesfromtheBritish

PsychologicalSociety19andinlinewiththeapproachusedinotherstudies.

13-15Discussionspostedin

theonlineforumsexaminedforthisstudyareaccessiblebyanyoneandsoseekinginformedconsent

isnotapplicable.Stepshavebeentakentomaximisetheanonymityofparticipants:forumsarenot

identifiedbyname,threadtitlesandusernameshavebeenreplacedwithuniqueidentifiersand

quoteshavebeenparaphrasedtofurtherprotectparticipants’identities.Allauthorsagreedthe

adaptedparaphrasedquotationspriortosubmission.

RESULTS

Forumsearchesyielded136pagesoftextcomprising65discussionscontainingpostsrelatingtothe

useoforalantibioticsforacne(Table1).Thesediscussionsdatedfrom2007to2016andappeared

tohavebeenpostedby294differentusers,althoughitispossiblethatsomeusersusedmorethan

oneusername.Thediscussionsweregenerallysupportive,sometimesconversational,oftentaking

theformthatoneuserstartedathreadwithaquestionorrequestforadvice,followedbyanumber

ofresponses.Theacne-specificforumincludedpostsfromuserswhoappearedtobebasedoutside

theUK(asjudgedfromtheircomments),whereastheotherforumsmainlyappearedtobeusedby

UKresidents.Theacne-specificforumcontainedmorepoststhatappearedtocomefromindividuals

withcommercialinterests,forinstancedirectingotherstowardsprivatenutritionists.Theparenting

forumappearedtohavegreatersitemoderation(i.e.anemployeeorforumuserwhorespondedto

someofthecommentsorremovedspam),whosometimesdirectedthread-starterstorelevant

pagesonNHSChoices.

Inductivethematicanalysisofdatafromthefourforumsrevealedthemesrelatingtoantibioticsand

othertreatments,navigationofservicesandtheimpactoflivingwithacne.Thispaperwillfocuson

themesrelatingtoviewsandconcernsaboutoralantibiotics(effectiveness,adverseeffectsand

frustrationsarounddelayedonsetofaction)andthenatureoftheadviceonofferinthediscussion

forums.

Perceptionsaroundeffectivenessandappropriatenessoforalantibioticsforacne

Onlineforumusersexpressedarangeofviewsrelatingtotheuseoforaltreatmentsingeneraland

oralantibioticsinparticular.Reasonsgivenfornotwantingtouseoraltreatmentsincludedageneral

preferencefor‘natural’remedies,whereasothersfeltthat‘treatmentfromtheinside’wasessential

forsuccessfultreatmentofacne,orthattopicaltreatmentswere“mild”whileoraltreatmentswere

“strong”.

I’mconstantlytakingmydaughtertothedoctors,asheracnehasspreadsomuch.Weeven

sawsomeoneatthehospital,butnothingwehavebeengivensofarhasbeenanyhelp.They

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saidshemightendupontablets,butIdon’tlikethesoundofthat–she’sonlyakid!Before

shetriesthatI’mgoingtolookin[cosmeticsshop]andseewhattheyhave.

Parentingforumuser193

Igavebenzoylperoxideago,butIdon’tthinkitdoesanygoodtotreatacneontheoutside

unlessyoufightitontheinsideaswell.

Generalforumuser79

Manyusersreportedsuccesswithantibioticsbutmanyalsoreportedthattheyreceivedtemporary

successwithoralantibiotics,butthatsymptomsreappearedorworsenedwhentheystopped.There

wasageneralperceptionoforalantibioticsbecomingineffective,oftenpresentedintermsofthe

personthemselvesbecoming‘resistant’or‘immune’tothemedication.

Someuserswerepostingwithindaysofstartingtreatmentwithoralantibiotics,seekingadvice

abouthowlongtheywouldtaketowork.Afewusers,ratherthanexpressingabeliefthatantibiotics

eitherwouldorwouldn’thelp,simplyexpressedtheirhopeordesperation,whileafewseemed

confusedaboutwhethertheiroraltreatmentwasanantibioticornot.

Iwenttothedoctorbecausemyskinwasupsettingmesomuch.I’mjustprayingthe

antibioticsthey’vegivenmewillfixit.

Generalmedicalforumuser37

Ihopetheroaccutaneantibioticthey’vegivenmewillmakethingsbetter.

Generalforumuser112

Whilemanyforumusersregardedoralantibioticsaseffective,orpartiallyeffective,therewerealso

manywhoperceivedthemasineffective.Oralantibioticsweresometimesonlymentionedbriefly

amidwiderpostslistingtreatmentsthathadbeentriedpriortoeventualresolutionofacnewithoral

isotretinoin.Thelatterwasoftencontrastedwithantibiotics(andothertreatments)asahighly

effectiveandlong-lastingtreatment,althoughtherewaswidespreadawarenessofcommonside

effects(e.g.dryskin/lips)andconcernsaboutpossiblementalhealthsideeffects.

Afterseveralappointmentswiththedoctormysonhasendeduponatopicallotionand

someantibiotics,butIknowtheywon’tdoanygood.Ithinkroaccutanewouldbemuch

betterforhim,soI’mtakinghimtoseeadermatologistprivately.

Parentingforumuser140

Adverseeffectswithantibiotics

Perceivednegativeeffectsassociatedwithtakingoralantibioticswerecommonlyreported,

sometimeslastingbeyondcessationoftreatment,particularlygastro-intestinalsideeffectsor

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‘weakenedimmunesystem’.Thereweresomereportofpeoplestoppingtheirantibioticsduetothe

negativeeffectstheyassociatedwiththem,mainlynauseaorothergastrointestinalsideeffects.

ThetetracyclinesItrieddidhelpquiteabitintheend,buttakingthemwassoterribleandit

wastakingsolongtogetbetterthatIgaveuponthem.Onegavemeanitchyrash,whilethe

othermademefeelreallysick.

Acneforumuser8

Theparentingforumincludedathreadofdiscussionaroundthenegativeeffectsoftaking

lymecyclinewhilepregnant,inwhichseveralusersmentionedstrugglingtoaccessdetailed

informationontheimpactthiswouldhaveontheirunbornchild.

Delayinonsetofactionoforalantibiotics

Peoplefrequentlydiscussedthedelayinonsetofactionoforalantibioticsandthatwaitingforeffect

wasadifficulttime.Manyseemedtohavebeenadvisedtoexpectthisdelay,althoughafewusers

appearedtothinktheywouldactwithindays.

Well,4daysinandstillnotlookinganybetter…

Parentingforumuser150

Thedelayinonsetofactionwasasourceoffrustrationtomany(“Ihateallthiswaiting”),particularly

thosewhoweredesperatetoseeimprovementintheiracne.Someperceivedthedelayinonsetof

actionandneedforseveralmonths’useinordertojudgeeffectivenessaspartofbeing“fobbedoff”

bytheirGP.Peoplewhowishedfororalisotretinoinastheirtreatmentofchoicefeltthatbeing

askedtotryantibioticsforsomemonthsfirstwasanunwelcomedelayandthiswasasourceof

dissatisfactionwithhealthcareprovidersinsomeinstances.

I’monantibioticstoo.MydoctorsaidIhavetotakethenfullcoursebeforeIcantry

somethingelse.Threemonthsissolongtowait–IfeellikeI’llbedealingwiththisforever.

Generalforumuser61

Antibioticsdon’tdoanythingforacne,thedoctorjustgivesyouthemtofobyouoff.

Generalforumuser281

Variableadviceandexperiencesinacneseverity

Aswithmanyonlinediscussionforums,thequalityoftheadviceusersofferedeachotherwashighly

variablebut,addedtothat,peopleappeartobediscussingverydifferentsortsof‘acne’,varying

from‘somespots’toseverenodulocysticacne.Manyusersappearedtoassumethattheywere

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talkingtosomeonewithacnesimilartotheirown,forinstance,peoplewithexperienceofsevere

acnesometimesadvisedothersthattheymustseeaDermatologistregardlessofseverity.

MyskinissobadandnothingItryhelps–I’vetrieddifferentskincareroutines,mydietis

healthyandIdrinkplentyofwater.It’sjustgetsmedowntoseeeveryonewithgreatskin

aroundmewhenminelookslikethis.

Generalforumuser277

YoushouldDEFINATELYgotoadoctor,andbeadamantaboutareferraltodermatology.I

havebeenseeingadermatologistandtheyarereallyhelping.Don’twait,asyourskinwill

getworseifyouleaveit.

Generalforumuser279

Otherswereadvisingcosmeticorlifestyleadvicewhereadvicetoconsultseemedmoreappropriate.

Well,I’mspendingyetanotherhotsunnydaysittinginmybedroom.Ihavenodularacne–

worsethanthenormalteenagething.Ican’tshowmyfaceoutsidewhenIlooklikethis.I

usedtobesohappy,andnowIthinkaboutkillingmyself.Ihaven’tseensomeofmyfriends

inatleastayear.Ihavetriedeverythingtotreatitbutnothinghelps.

Generalforumuser284

YoucouldgiveNeemoilorTeaTreeOilago.

Generalforumuser285

Ithasmajorsideeffects,butasyouracneisaffectingyousomuchyoushouldconsider

Roaccutane.YouwouldneedadermatologyreferralfromyourGPtogetit.

Generalforumuser286

Sunlightisgreatfortheskin,soyoushouldgooutasmuchasyoucan!

Generalforumuser287

Goseeadoctor?

Generalforumuser288

Manypeoplestronglyrecommendedthatpeoplewhoweresufferingfromacneseekhelpfroma

doctor,eitherformedicationtheGPcouldprescribe,orforareferraltodermatology.Itwasstriking

howfrequentlyuserswereurgedtopressurisetheirGPforareferraltoaDermatologist.Thismaybe

relatedtoinputfrompeoplewithahistoryofsevereacne,orbecauseofinputfromusersbased

outsidetheUK(particularlyintheacne-specificforum).Sometimespeopleadvisedseekinga

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dermatologyreferralfortreatmentsthataGPcanprescribe,oradvisedpeoplewithrelativelymild

skinproblemstoseekreferral,whichmayhaveledtodifficultconsultations.

Onlyoneusercommentedthatno-onekneweachother’sseverityandreflectedthattheirdoctor

mightbewell-placedtojudgeacneseverity.

There’sloadsofinformationavailableontheinternet…butultimatelyonlyyourdoctorwill

reallybeabletodecidehowsevereyouracneisandwhetheritisgettingbetter.No-onehere

canhelpyouwiththat.It’dbeareallygoodideatogobacktoseeyourGP…

Generalforumuser275

DISCUSSION

Wefoundabroadrangeofviewsandexperiencesrelatingtooralantibioticsexpressedinonline

discussionforumsandamixofpotentiallyhelpfulaswellasunhelpfuladvice.Reportedexperiences

withoralantibioticsrangedfromrapidandtotalsuccesstomakingtheacneworseandcausing

intolerablesideeffects.Assuch,itisdifficulttopredictwhatattitudemaybefosteredinforumusers

whoseekadviceaboutoralantibiotics,otherthanalikelihoodthattheywouldfindthisa

bewilderingexperience.Dissatisfactionwithoralantibioticsrelatedtoavarietyoffactors:a

perceptionthattheantibioticsdidn’tworkorstoppedworkingwithtime,experiencesofside

effects,andageneralreluctancetotakeantibiotics.

Findingsinthecontextofexistingliterature

Forumusersreferredtoantibioticresistancebothinrelationtobothtopicalandoralantibioticsbut,

ashasbeenfoundinotherstudies,20antibioticresistancewasgenerallyinterpretedasapropertyof

thehumanbodyratherthanbacterialcells.‘Resistance’wasgenerallyonlymentionedasareason

fortreatmenttostopworking;neitherthelongtermimplicationsfortheusernorthewider

implicationsofoveruseofantibioticsforhealthcarewerediscussed,thoughitisunclearwhetherthis

isbecauseofalackofawarenessorbecauseitwasn’trelevanttothediscussionthread.Thisis

concordantwithfindingsfromotherstudies,whichhavefoundthatparticipantsoftenview

antibioticresistanceasbeingoflowrisktothemselvesandmoreatopicforconcernforcliniciansor

otherpeople.21

Wefoundthatforumusersfrequentlydiscussedexperienceswithconsultingdoctors,generally

frustration,andoftenadvisedeachothertopressuriseGPsforreferraltoaDermatologist.This

echoesqualitativeresearchcarriedoutamongstpatientswithotherdermatologicalconditions

suggestingthattheymayfaceparticularchallengesinthedoctor-patientrelationship;including

feelingsof‘notbeingtakenseriously’andthatbothGPsandDermatologistscanbeperceivedasnot

engagingwiththepsychologicaldistressassociatedwithskindisease.22-24

Qualitativeresearchon

eczemahashighlighteda‘mismatch’ofviewsbetweenpatients/carersandhealthprofessionalsthat

canaddtofrustrations.25,26

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Thefindingthatpeopleoftenobtainadviceonlineabouthowtonavigatehealthservices,aswellas

thepotentialforbothpositiveandnegativeimpacts(inthiscase,bothusefuladviceandpotentially

confusingorinappropriateadvice)havebeenfoundinotherstudiesofonlinediscussionforums.12

Limitations

Thisresearchhaslimitations,someofwhichareinherenttocarryingoutqualitativeresearchin

onlinediscussionforums.Whilethisallowsaccesstorichnaturalisticdata,littleinformation

availableaboutparticipants’demographics,whichprecludespurposivesampling.Thispresentsa

particulardifficultywithacne,whichissocommonlyexperiencedandsovariedinseverity.

Contextualinformationonseverityandimpactwouldbehighlyrelevanttounderstandingattitudes

totreatments.However,tofindthemesincommonwithinthisheterogeneoussamplesuggeststhat

thesearehighlyrelevanttounderstandingtheconcernsofpeoplewithacne.Itmaybethatpeople

whouseonlinediscussionforumsdifferinimportantwaysfromthosewhodonotanditwouldbe

usefultocarryoutfurtherresearchtoexplorethis.

Researchimplications

Althoughwehavefoundsignalspointingtowardsexplainingthepopularityoforalantibiotics(e.g.

theperceptionthattopicalsare‘mild’andoraltreatmentsare‘strong’),furtherexplorationofover-

useofantibioticsforacnecouldfocusonqualitativeinterviewswithbothhealthprofessionalsand

peoplewitharangeofacneseveritiesandtreatmentexperiences.Insomenon-dermatological

conditionsitisthoughtthatpatientsplacepressureonhealthprofessionalstoprescribeantibiotics

duetoaperceptionthattheyforma‘magicbullet’,27yetwedonotknowwhetherthisisthecasein

acne.

Furtherresearchisneededtofindeffectivewaysofcommunicatingwithpeoplewithacne(for

instancethroughonlineresources),includingprovidingsupportduringdelayedonsetofactionof

treatments,supportwithadherenceandaddressingquestionsarisingoutsidetheconsultation.

Clinicalimplications

Thesefindingscanhelpclinicianstounderstandtheperspectivesofpatientswithacne,andgainan

insightintothehighlyvariableinformationthattheymayaccesspriortoconsulting.Assessing

informationneedsandhealthbeliefsisanimportantpartofthedermatologyconsultation28anda

keyroleofhealthprofessionalsistosignpostpeopletowardshighqualityevidence-based

informationfreefromcommercialbias,1particularlyasitisknownthatpatientsdonotrecalla

substantialproportionofinformationgiventothemduringtheconsultation.29Aquantitativestudy

ofonlineforumpostsforAcnerosaceafoundextensiveinformationneedsandtheauthors

concludedthatifdoctorsofferedpatientsreliablesourcesofinformationthenthismayprevent

patientstreatmentnon-adherenceandfollowingpotentiallyerroneousadvicefromtheinternet.30

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CONCLUSIONS

Thisstudyshowsthatonlineforumspresentreaderswithdiverseadviceandviewsonoral

antibiotics,whichcouldatbestbeconfusingandatworstleadtoearlyabandonmentoftreatments,

requestsforinappropriatereferrals,challengingconsultationsandpatientdissatisfaction.Someof

themorepotentiallyhelpfulpostsdirectedreaderstowardsreliablesourcesofinformation,suchas

NHSChoices.Ifpatientswithacneweredirectedtothisinformationthentheymayexperience

bettertreatmentoutcomes.

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2 Acnevulgaris.In:ClinicalKnowledgeSummaries-CKS.2014.

3 PurdyS,LangstonJ,TaitL.Presentationandmanagementofacneinprimarycare:a

retrospectivecohortstudy.BritishJournalofGeneralPractice2003;53:5.

4 FrancisNA,EntwistleK,SanterMetal.TheManagementofAcneVulgarisinPrimaryCare:A

cohortstudyofconsultingandprescribingpatternsusingCPRD.BritishJournalof

Dermatology2016:n/a-n/a.

5 WalshTR,EfthimiouJ,DrénoB.Systematicreviewofantibioticresistanceinacne:an

increasingtopicalandoralthreat.TheLancetInfectiousDiseases2016;16:e23-e33.

6 EadyAE,CoveJH,LaytonAM.IsAntibioticResistanceinCutaneousPropionibacteria

ClinicallyRelevant?Americanjournalofclinicaldermatology2003;4:813-31.

7 MurrayCD,RhodesK.'Nobodylikesdamagedgoods':theexperienceofadultvisibleacne.

Britishjournalofhealthpsychology2005;10:183-202.

8 PriorJ,KhadarooA.‘Isortofbalanceitout’.Livingwithfacialacneinemergingadulthood.

JournalofHealthPsychology2015;20:1154-65.

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suicide--aqualitativestudy.AustFamPhysician2005;34:795-7.

10 HorneR,WeinmanJ.Predictingtreatmentadherence.AdherencetoTreatmentinMedical

Conditions,editedbyLynnMyersandKennyMidence1998:25-50.

11 OfficeforNationalStatistics.InternetAccess–HouseholdsandIndividualsIn.

http://www.ons.gov.uk/peoplepopulationandcommunity/householdcharacteristics/homeint

ernetandsocialmediausage/bulletins/internetaccesshouseholdsandindividuals/2015-08-06

(accessed15June2016).2015.

12 ZieblandS,WykeS.HealthandIllnessinaConnectedWorld:HowMightSharingExperiences

ontheInternetAffectPeople’sHealth?TheMillbankQuarterly2012;90:41.

13 AttardA,CoulsonNS.AthematicanalysisofpatientcommunicationinParkinson’sdisease

onlinesupportgroupdiscussionforums.ComputersinHumanBehavior2012;28:500-6.

14 CoulsonNS.Sharing,supportingandsobriety:aqualitativeanalysisofmessagespostedto

alcohol-relatedonlinediscussionforumsintheUnitedKingdom.JournalofSubstanceUse

2014;19:176-80.

15 TeasdaleE,MullerI,SanterM.Carers’viewsoftopical-corticosteroiduseinchildhood

eczema:aqualitativestudyofonlinediscussionforums.BritishJournalofDermatology2016:

n/a-n/a.

16 AllenC,VassilevI,KennedyAetal.Long-TermConditionSelf-ManagementSupportinOnline

Communities:AMeta-SynthesisofQualitativePapers.JournalofMedicalInternetResearch

2016;18:e61.

17 RichardsT,SnowR,SchroterS.Co-creatinghealth:morethanadream.Bmj2016;354.

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18 BraunV,ClarkeV.Usingthematicanalysisinpsychology.QualitativeResearchinPsychology

2006;3:77-101.

19 HewsonCBTBI,CoulsonNS,etal..TheBritishPsychologicalSociety:EthicsGuidelinesfor

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20 Brookes-HowellL,ElwynG,HoodKetal.‘TheBodyGetsUsedtoThem’:Patients’

InterpretationsofAntibioticResistanceandtheImplicationsforContainmentStrategies.

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21 McCulloughA,ParekhS,RathboneJetal.Asystematicreviewofthepublic'sknowledgeand

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22 MaginPJ,AdamsJ,HeadingGSetal.Patientswithskindiseaseandtheirrelationshipswith

theirdoctors:aqualitativestudyofpatientswithacne,psoriasisandeczema.MedJAust

2009;190:62-4.

23 NelsonPA,Chew-GrahamCA,GriffithsCEetal.Recognitionofneedinhealthcare

consultations:aqualitativestudyofpeoplewithpsoriasis.TheBritishjournalofdermatology

2013;168:354-61.

24 GoreC,JohnsonRJ,CaressALetal.Theinformationneedsandpreferredrolesintreatment

decision-makingofparentscaringforinfantswithatopicdermatitis:aqualitativestudy.

Allergy2005;60:938-43.

25 SanterM,BurgessH,YardleyLetal.Experiencesofcarersmanagingchildhoodeczemaand

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14

Figure1

Onlineforumsearchstrategy

Forumsidentifiedthroughsearchengines:n=33

Exclusions:

Forumswithnopostsinthepast6months:n=4

Forumswithfewerthan3relevantthreads:n=17

Forumseligibleforstudy:n=12

Forumsforotherspecifichealthconditionsnot

consideredfurther:n=3

Remainingforums:n=9

Acnespecific:n=1

Generalmedical:n=2

General:n=4

Parenting:n=2

Selectedforstudy:n=4

Acnespecific:n=1;Threads:n=5,Participants:n=31

General:n=1;Threads:n=26,Participants:n=121

Generalmedical:n=1;Threads:n=11,Participants:n=21

Parenting:n=1;Threadsn=23,Participants:n=121

Forumselectionbasedonnumber

ofrelevantaccessiblethreads

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15

Box1

Table1

Datasources

Numberof

pagesoftext

(point11)

Numberof

relevant

discussion

threads

Numberofforum

userscontributing

tothreads

Datesof

discussion

threads

Acne-specific

forum

16 5 31 2009–2016

Generalforum 57 26 121 2007–2016

Generalmedical

forum

9 11 21 2008–2015

Parentingforum 54 23 121 2011–2016

All4discussion

forums

136 65 294 2007–2016

- Fortheacnespecificforum,wherenoviablesearchenginewaspresent,the

forumsweresearchedmanuallyforrelevantthreadsuntilasufficient

volumeofdatawasobtainedorallrelevantthreadshadbeenextracted.

- Forthegeneralandthegeneralmedicalforums,whereachronological

searchfunctionwaspresent,theresearchersearchedfor“acneantibiotics”,

then“acne”,then“acnetreatment”.Ineachcase,relevantthreadswere

identifiedfromnewesttooldest,andrelevantpostsextracted.Postswere

extractedfromthegeneralforumuntilasufficientvolumeofdatawas

obtained;thegeneralmedicalforumhadfewerrelevantthreads,soall

relevantthreadswereextracted.

- Fortheparentingforum,whereasearchfunctionwaspresentbutresults

werenotreturnedchronologically,theresearchersearchedfortheterms

describedabove,andthenthefirst10pagesofeachsearchwereexamined

forrelevantthreads.Onceallrelevantthreadswereidentified,thesewere

examinedchronologically,fromnewesttooldest,andrelevantposts

extracteduntilasufficientvolumeofdatawasobtained.