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.
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
Fundingsources:none
Conflictofinterest:nonedeclared
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.
3
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.
4
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.
5
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.
6
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
7
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
8
‘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
9
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
10
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
11
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
12
CONCLUSIONS
Thisstudyshowsthatonlineforumspresentreaderswithdiverseadviceandviewsonoral
antibiotics,whichcouldatbestbeconfusingandatworstleadtoearlyabandonmentoftreatments,
requestsforinappropriatereferrals,challengingconsultationsandpatientdissatisfaction.Someof
themorepotentiallyhelpfulpostsdirectedreaderstowardsreliablesourcesofinformation,suchas
NHSChoices.Ifpatientswithacneweredirectedtothisinformationthentheymayexperience
bettertreatmentoutcomes.
1 WilliamsHC,DellavalleRP,GarnerS.Acnevulgaris.TheLancet2012;379:361-72.
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.
9 MaginP,AdamsJ,HeadingGetal.Patients'perceptionsofisotretinoin,depressionand
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.
13
18 BraunV,ClarkeV.Usingthematicanalysisinpsychology.QualitativeResearchinPsychology
2006;3:77-101.
19 HewsonCBTBI,CoulsonNS,etal..TheBritishPsychologicalSociety:EthicsGuidelinesfor
Internet-mediatedResearch.In.2013.
20 Brookes-HowellL,ElwynG,HoodKetal.‘TheBodyGetsUsedtoThem’:Patients’
InterpretationsofAntibioticResistanceandtheImplicationsforContainmentStrategies.
JournalofGeneralInternalMedicine2012;27:766-72.
21 McCulloughA,ParekhS,RathboneJetal.Asystematicreviewofthepublic'sknowledgeand
beliefsaboutantibioticresistance.JournalofAntimicrobialChemotherapy2016;71:27-33.
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
theirviewsonitstreatment:aqualitativestudy.TheBritishjournalofgeneralpractice:the
journaloftheRoyalCollegeofGeneralPractitioners2012;62:e261-7.
26 NoerresletM,JemecGB,TraulsenJM.Involuntaryautonomy:patients'perceptionsof
physicians,conventionalmedicinesandrisksinthemanagementofatopicdermatitis.Social
Science&Medicine.69(9):1409-152009.
27 PinderR,SallisA,BerryDetal.Behaviourchangeandantibioticprescribinginhealthcare
settings.Literaturereviewandbehaviouralanalysis.In:2015.London:PublicHealthEngland.
28 HongJ,NguyenTV,ProseNS.Compassionatecare:enhancingphysician-patient
communicationandeducationindermatology:PartII:Patienteducation.JAmAcad
Dermatol2013;68:364e1-10.
29 LeyP.Memoryformedicalinformation.BritishJournalofSocialandClinicalPsychology
1979;18:245-55.
30 AliniaH,MoradiTuchayiS,FarhangianMEetal.Rosaceapatientsseekingadvice:Qualitative
analysisofpatients’postsonarosaceasupportforum.JournalofDermatologicalTreatment
2016;27:99-102.
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
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.