Full length article
Cancer awareness in the general population varies with sex, age and media coverage: A population-based survey with focus on gynecologic cancers
Tina Fonnes
a,b, Ingrid O. Telle
c,1, David Forsse
a,b,1, Runa Falck
c, Jone Trovik
a,b, Ingfrid S. Haldorsen
d,e, Camilla Krakstad
a,b,*
aCentreforCancerBiomarkers,DepartmentofClinicalScience,UniversityofBergen,Bergen,Norway
bDepartmentofObstetricsandGynecology,HaukelandUniversityHospital,Bergen,Norway
cDepartmentofComparativePolitics,UniversityofBergen,Bergen,Norway
dMohnMedicalImagingandVisualizationCentre(MMIV),DepartmentofRadiology,HaukelandUniversityHospital,JonasLiesvei65,5021,Bergen,Norway
eSectionforRadiology,DepartmentofClinicalMedicine,UniversityofBergen,Bergen,Norway
ARTICLE INFO
Articlehistory:
Received24July2020
Receivedinrevisedform19October2020 Accepted23October2020
Keywords:
Gynecologiccancer Cancerawareness Populationsurvey Cervicalcancer Endometrialcancer Ovariancancer
ABSTRACT
Objectives:Thereis aneedformoreknowledgeaboutthepublic awarenessand attitudestowards gynecologiccancers.Weemployedaresearch-purposepopulation-basedcitizenpaneltoassesshow oftenpeoplerecallgynecologiccancerscomparedtoothercancertypesand toexploretherelative importanceofdifferentinformationchannelsinrelayingcancerinformation.
Studydesign:WeconductedanonlinesurveyusingtheNorwegianCitizenPanel(n=1441respondents), exploringassociationsbetweendemographicfactorsandfrequencyofmentioningspecificcancertypes.
WealsosearchedTheNorwegianMediaArchivetoassessthemediacoverageofdifferentcancertypes.
Factorsaffectinglikelihoodofmentioningdifferentcancerswereassessedbymultivariateregression.
Results:Only41%ofrespondentslistedoneormorecancersinfemalegenitalorgans.Ofthegynecological cancers, cervical cancer was most frequently mentioned (28 %), followed byovarian (12 %) and endometrialcancer(11%).Femalerespondersweremorelikelytomentioncervical(OR2.47,95%CI2.16–
2.78)andovariancancer(OR2.09,95%CI1.60–2.58)thanmaleresponders,butnotendometrialcancer.
Familyandfriendswhohavehadcancer(50%)anddifferenttypesofmediacoverage(41%)were reportedasthemostcommonsourcesofcancerinformation.Thethreemostfrequentlymentioned cancertypesinoursurveywerebreast(77%),hematologic(76%)andlungcancer(75%),whichalsowere thecancertypeshavingmostmediacoverage.
Conclusions:GynecologicalcancersarelessfrequentlymentionedbyNorwegiancitizenswhencompared toseveralothercancertypessuchasbreast-,hematologic-andlungcancer.Sexandageareimportant factorsthataffectawarenessofcancertypes.Mediaislikelytoplayanimportantroleinwhatcancer typesthepublicrecalls.
©2020TheAuthor(s).PublishedbyElsevierB.V.ThisisanopenaccessarticleundertheCCBYlicense (http://creativecommons.org/licenses/by/4.0/).
Introduction
In2018,gynecologiccancers(mainlyendometrial,ovarianand cervicalcancer)accountedformorethan1.2millionnewcasesand closeto600.000deathsworldwide,incidenceratesvaryglobally
duetodemographicaldifferencesinriskfactors[1].InNorway,like western countries in general, endometrial cancer is the most commonofthegynecologicalcancerswith797newcasesin2018, followedbyovarianandcervicalcancerwith444and355 new casesrespectively,constituting11%ofcancersinwomen[2].
Public and patient involvement in questions concerning medical research and health priorities is considered to be of increasingimportance [3]. The frameworksfor health careand researchlargelydependonpoliticaldecisionsandthesupportof idealorganizations,whichagainareaffectedbythethoughtsand interests of the general public [4]. It is clear that gynecologic cancerswillremain aglobal challengefor femalehealth in the coming decades, and appreciating the link between public Abbreviations:HPV,humanpapillomavirus;NCP,Norwegiancitizenpanel;ICD,
10-internationalstatisticalclassificationofdiseasesandhealthrelatedproblems, 10threvision.
*Correspondingauthorat:DepartmentofClinicalScience,UniversityofBergen, JonasLiesVei72,5020Bergen,Norway.
E-mailaddress:camilla.krakstad@med.uib.no(C.Krakstad).
1Sharedsecondauthor.
https://doi.org/10.1016/j.ejogrb.2020.10.051
0301-2115/©2020TheAuthor(s).PublishedbyElsevierB.V.ThisisanopenaccessarticleundertheCCBYlicense(http://creativecommons.org/licenses/by/4.0/).
ContentslistsavailableatScienceDirect
European Journal of Obstetrics & Gynecology and Reproductive Biology
j o u r n a l h o m e p a g e : w w w . e l s ev i er . c o m / l o c a t e/ e j o g r b
awarenessandfundingwillbeimportantforincreasingresearch efforts and improving treatment.Asfor cancers in general [5], knowledge of gynecological cancers is also crucial in order to facilitate disease prevention, early diagnosis [6] and informed decision making for patients. Additionally, improved public awareness of gynecological cancers may contribute to reduce health inequalities (egincreasing participation in HPV (human papillomavirus)-vaccinationandscreeningprogramsforcervical cancer).
We are currently conducting a large survey to assess the knowledgeandattitudesofgynecologiccanceramongNorwegian citizens.Inthispaperwepresenttheresultsofthefirstpartofthe study,whereweaskedarepresentativeselectionoftheNorwegian populationtolistwhichcancertypestheyhadheardofandfrom whatsourcestheyreceivedinformationaboutcancer.Theaimwas toassesshowfrequentlygynecologicalcancerswerementioned comparedtoothercancertypes,andifdemographicfactorsaffect the likelihood of mentioningany of the gynecological cancers.
Additionally, we explored digital media archives to evaluate if there are associations between how often a cancer type was mentionedbyrespondentsandtheincidence,prevalence,mortal- ityormediacoverageofthesamecancertype.
Materialandmethods Participants
The Norwegian Citizen Panel (NCP) is a research-purpose internetpanelthataimstosurveypoliticalandsocialattitudesin Norway,andseveralreportsonvarioustopicshavebeenpublished [7–9]. NCP is based on a probability sample of the general Norwegian population drawn from the Norwegian National Registryandconsistsofmorethan7000activeparticipants.Panel memberscompleteanonlinequestionnairethreetimesannually.
Thedatausedinthisstudywerecollectedinthe12thwaveofNCP, fieldedfromJune5th untilJune 25th, 2018[10].Existingpanel memberswereinvitedtoparticipatebyemail,andreminderswere distributedbyemailandSMS.Ourstudycomprisesarandomized subgroupof 1441respondents.Demographicvariablesfromthe NCPthatwereavailableforanalyzesweresex,yearofbirthand education. Information on the sex and year of birth of the respondentswereextractedfromtheNationalPopulationRegistry ofNorway.“YearofBirth”isadiscretevariableconsistingofthe following seven age-categories: respondents born in 1939 or
earlier,1940–1949,1950 59,1960–1969,1970–1979,1980–1989, and1990orlater.Thevariable“Education”wasself-reportedinthe surveyandindicatestherespondentshighestcompletededucation reduced to three categories: No education/elementary school, UppersecondaryeducationandUniversity/Universitycollege[11].
Surveyquestions
Surveyquestions weredesigned bya multidisciplinaryteam represented by gynecologists, medical researchers and social scientists.QuestionswerereviewedbytheNCPboardbeforebeing includedinthesurvey.Question1wasanopenquestionphrased:
“Whattypesofcancerhaveyouheardof?Pleasewritedownall typesyoucanthinkof”Question2wasphrased:“Wheredoyouget yourinformationaboutcancer?pleasetickyour3mainchoices” whererespondentscouldtickfor;“Newspapersandmagazines”,
“Booksandmovies”,“Friends,familyoracquaintanceswhohave had cancer”, “Health professionals”, “Information brochures”,
“Workandeducation”,“TVandradio”,“Socialmediaandblogs”,
“Searching the internet”, “Friends, family and acquaintances”,
“Other(fillout)”,“Idon’tknowanythingaboutcancer”. Classificationofcancertypes
Listedcancertypes werecategorizedinto organ/sitespecific groups based onthe WorldHealth Organization’sinternational statisticalclassificationofdiseasesandhealth relatedproblems, 10threvision(ICD-10) [12].For somecancertypeswe grouped several related ICD-10diagnoses. Thiswas done bothto create reasonably sized groups in cancers where manysubgroups are generally known (e.g. hematological cancer; C81-C96) and to resolvecaseswhereidentificationofwhichcancertheresponder actually intendedtolist was unclear(e.g.melanoma/squamous skin cancer). A full overview of ICD-10 codes and groups is providedinAppendixA,TableA1.
Mediasearch
ThedigitalNorwegianmediaarchive(Atekst)wassearchedto quantifythemediacoverageofdifferentcancertypesinNorwegian newspapers[13].DatapublishedbetweenJanuary1st2000and October31st2019wereincluded.Searchphraseswerelimitedto layterms(i.e.braincancerinsteadofglioblastoma)(AppendixA, TableA2).
Table1
Demographicinformationonsex,ageandeducationofthe1441participantsfromtheNorwegianCitizenPanel,groupedasrespondentsornon-respondentstotheopentext question“whattypesofcancerhaveyouheardof?”.
Allparticipants Respondents Non-respondents
n(%) n(%) n(%)
All 1441 1181(82) 260(18)
Sex
Female 723(50) 607(51) 116(45)
Male 718(50) 574(49) 144(55)
Yearofbirth(age,June2018)
1939orearlier(79) 35(3) 29(2) 6(2)
1940–1949(69–78) 251(17) 195(17) 56(22)
1950–1959(59–68) 348(24) 278(24) 70(27)
1960–1969(49–58) 342(24) 284(24) 58(22)
1970–1979(39–48) 216(15) 178(15) 38(15)
1980–1989(29–38) 142(10) 119(10) 23(9)
1990orlater(18–28) 107(7) 98(8) 9(3)
Education
Noeducation/elementaryschool 114(8) 84(7) 30(12)
Uppersecondaryeducation 444(31) 353(30) 91(35)
University/college 849(59) 721(61) 128(49)
Notanswered 34(2) 23(2) 11(4)
Statisticalanalysis
Analysesandgraphicswereperformedusingacombinationof thesoftwareStata(Version15.1,StataCorp,CollegeStation,Texas) andtheR3.6.1(RCoreTeam,2019).Multipleregressionmodels werefittedforeachofthegynecologicalcancersandothercancers mentioned by60%oftherespondents.Afixedsetofpredictors (sex, year of birth, education and total number of cancers mentioned)wasincludedinthemultipleregressionmodels.For allanalysesp-values0.05wereconsideredstatisticallysignifi- cant.
Ethicalapproval
No ethicalapprovals wereneededtoconduct this study.All respondersintheNorwegianCitizenPanelparticipatedvoluntari- ly.
Results Studycohort
Atotalof1441Norwegiancitizenswereincludedinthissurvey cohort,723(50%)womenand718(50%)men(Table1).Allage groups wererepresented;howeverthemajorityofrespondents werebetween49and68years(bornintheperiods1950 59(n= 348,24%)or1960 69(n=342,24%).Mostparticipantsreportedto have university/collegeeducation (n =849,59 %), whileonly a small groupof participantsreportedtoattendonly elementary schoolorhavenoeducation(n=114,8%).
Whattypesofcancerhaveyouheardof?
The first question in the survey was an opentext question whereparticipantswereaskedtofillinallthetypesofcancersthey had heard of. Among the1441 participantsasked,1181 (82 %) answeredthequestionwhile191(13%)didnotreportanycancers.
Participants not adheringtothe structureof the questionwith answers like “know allcancers” or “know manycancers” were classifiedasnon-respondents(n=69,5%,Table1).Respondents listed inaverage 7.2 types ofcancer (range0–26), and women tendedtolistmorecancertypes(mean8.7)thanmen(mean6.8).
Breastcancerwasthemostfrequentlymentionedcancertype(n= 911(77%)),followedbyhematologiccancers(n=894(76%)),lung (n=889(75%))andskin(n=877(74%)).Prostatecancerwaslisted by 713 (60 %) respondents,while only 485(41 %) respondents mentionedoneormorecancersinfemalegenitalorgans(Table2).
Ofthegynecologicalcancers,cervicalcancerwasmostfrequently mentioned(n=316,28%),followedbyovarian(n=136,12%)and endometrialcancer(n=127,11%).
Female respondents mentioned cancers in female genital organs (women: n = 346 (57 %) vs men: n = 139 (24 %), and breastcancer(women:n=519(86%),men:n=392(68%))more frequently thanmale (Fig.1A).Additionally, each gynecological cancer (endometrial, ovarian and cervical cancer) was more frequently mentioned by female respondents (Fig. 1B). Male respondentsmoreoftenmentionedprostatecancer(women:n= 350(58%),men:n=363(63%))andcancerinmalegenitalorgans (women: n = 111 (18 %), men: n = 142 (25 %)) than female respondents.
In multiplelogistic regressionanalysis, the respondent’ssex was an independent predictorof the likelihood of mentioning severalofthecancertypes.Femalerespondentsweremorelikely to mention cervical cancer (OR: 2.47, CI: 2.16–2.78, p < 0.01), ovariancancer(OR:2.09,CI:1.60–2.58,p<0.01)andbreastcancer (OR:2.13,CI: 1.83–2.43, p <0.01), butnot endometrial cancer, comparedtomalerespondents(Fig.2A).Malerespondentswere howevermorepronetomentionprostatecancer(OR:0.59,CI:0.34 –0.85,p<0.01),lungcancer(OR:0.58,CI:0.28–0.88,p<0.01)and skincancer(OR:0.69,CI:0.39–0.98,p=0.01)comparedtofemale respondents (Fig. 2A). Higher age reduced the likelihood of mentioning cervical cancer (OR: 1.34, CI: 1.24–1.43, p < 0.01) andhematologiccancer(OR:1.21,CI:1.11–1.31,p<0.01),whilethe likelihoodofmentioningcolorectalcancerincreased(OR:0.83,CI:
0.75 – 0.92, p <0.01) (Fig. 2B).The probability of mentioning hematologiccancerandendometrialcancerwaslowerforbothof the categories “upper secondary education” and “university/
university college” (p < 0.01 for both, Appendix A, Table A3).
Unsurprisingly, the variable “total cancers mentioned” was associatedwithanincreasedlikelihoodofmentioninganycancer type.
National data on prevalence, incidence and mortality was retrieved from theCancer registry of Norway [2] and grouped accordingtothesameICD-10codesasinourstudy(Fig.3).Thefive cancer types most frequently mentioned in our study (breast, hematologic,lung,skinandcolorectalcancer)werealsofoundto beamongthecancerswiththehighestprevalence,incidenceor mortality. Still, there was no direct relationship between the rankingofspecificcancertypesinourstudyandtheprevalence, incidenceormortalityofthesamecancertypeinthepopulation.
Prostatecancer,thecancertypewiththehighestprevalenceand incidenceintheNorwegianpopulation,was onlyrankedasthe sixthmostfrequentlymentionedcancerbytheNCPrespondents.
Incontrast,hematologiccancerwasthesecondmostfrequently mentionedcancertype,despitenothavingthehighestprevalence (rank:5),incidence(rank:6)normortality(rank:4).Thissuggests thatotherfactorsbesidesprevalence,incidenceandmortalityalso mayaffectthelikelihoodofmentioningspecificcancers.
Wheredoyougetyourinformationaboutcancer?
Participants were asked where they get information about cancerandweretoldtoselecttheirtopthreechoicesfromalistof potentialinformationsources.Inall,1441personsansweredthis question. 50%(n=720) ofrespondentsreportedthattheyuse familymembersandfriendswhohavehadcancerasasourceof cancerinformation(Fig.4A).Newspapers/magazinesandTV/radio werethesecondand thirdmost frequentlyreportedsourcesof information, each reported by 41 % (n = 592 and n = 588) of respondents.Lessthanonefourthofrespondentslistedhealthcare personnel(22%,n=312)orinformationbrochures(14%,n=206) amongtheirtopthreesourcesofinformationaboutcancer.
Table2
Overviewofwhatcancertypesthatwerementionedbytherespondentsthat answeredtheopentextquestion“whattypesofcancerhaveyouheardof?”.
Cancertype n(%)
Breast 911(77)
Hematologic 894(76)
Lung 889(75)
Skin 877(74)
Colorectal 767(65)
Prostate 713(60)
Digestiveorgans,others 622(53)
Brain/nervoussystem/eye 512(43)
Femalegenitalorgans 485(41)
Boneandsofttissue 270(23)
Malegenitalorgans,others 254(22)
Urinaryorgans 188(16)
Upperrespiratoryorgans 179(15)
Oral 139(12)
Thyroid 83(7)
Totalnumberofrespondents 1181(100)
Through asystematic searchofthedigital Norwegianmedia archive(Atekst)forcancerrelatedarticles,breastcancerwasfound tohavethehighestmediacoverageinthisperiod(15711published articles),followedbyhematologiccancers(9473articles)andlung cancer (8899 articles, Fig. 4B). Breast-, hematologic- and lung cancer were also the three most frequently mentioned cancer typesinoursurvey.
Discussion
Wereport,toourknowledge,thefirstpopulationrepresenta- tivedataonwhatcancertypestheNorwegianpopulationeasily recallandthatthisisaffectedbysex,ageandeducationallevel.
Additionally,weprovideananalysisoftheimportanceofdifferent information channels for relaying cancer information, both as reportedbythestudyparticipantsandbyanalyzingmediaarchives anddemonstratetheassociationbetweenfrequentpublicityand likelihoodofmentioningspecificcancertypesinoursurvey.
Gynecologic cancers ranked as number 9 of the 15 cancer groupsmentionedbyparticipantsinourstudy,indicatingthatthe populationawarenessofgynecologiccancersispoorercompared other cancers, such as breast, hematologic and lung cancer. A
recentEuropeansurveyfoundthat underonefourthofwomen have adequate knowledge about their age-specific risk of developing female cancers such as breast, ovarian, cervical or endometrialcancer[14],whileanothersurveyfoundthatthereis limitedawarenessofobesityasriskfactorforendometrialcancer inwomenintheUS [15].Together,this canbeinterpretedasa relativelackofawarenessandknowledgeofgynecologicalcancers in these populations and a potential target for interventions designedtoimprovepreventionstrategies.
Among gynecologic cancers, cervical cancer was most fre- quentlymentioned,followedbyovariancancerandendometrial cancer. Interestingly, endometrial cancer is decidedly more commoninNorwayand otherEuropeancountries[1], showing thatotherfactorsthantheincidenceratecontributetowhether peoplerecallthespecificcancertypes.Eveninrelevantagegroups, less than 20 % of respondents mentioned endometrial cancer, which is unfortunate, as preventivemeasures(e.g. weight-loss, gestagensinhormonalreplacementtherapy)andearlydiagnosis areimportantfactorsinlimitingtheimpactofthisdisease[16].
Increasedawarenessofcervicalcancerinyoungerwomenislikely relatedtotheHPV-vaccinationprogram,whichwasimplemented inNorwayin2009.AlinkbetweenHPVvaccinationandincreased Fig.1.Ageandsexofrespondentsmentioningselectedcancertypes.Barchartdemonstratingthepercentageofmaleandfemalerespondentswithineachagegroupthat mentionedbreastcancer,prostatecancerandcancersinfemaleandmalegenitalorgans(A).Analysesofthespecificcancersinthegroup“femalegenitalorgans”withbar chartdemonstratingthepercentageofmaleandfemalerespondentswithineachagegroupmentioningendometrial,ovarianandcervicalcancer(B).
knowledgeofcervicalcancerhaspreviouslybeendocumentedina British study, where the authors found that female students’ knowledgeofthelinkbetweenHPVinfectionanddevelopmentof cervicalcancerhadincreasedasaconsequenceofimplementation oftheHPVvaccine[17].
Interestingly,thetopthreerankedcancersinthemediaarchive searchcorrespondtothethreemostfrequentlylistedcancertypes inoursurvey.Althoughthereportednumberofarticlesfromour searchmaynotbefullyaccurate,duetothephrasingofthesearch word or duplicated articles (i.e. cancers with multiple search terms, suchas“blood cancer” and“leukemia”),ourfindingsare likely toberepresentativeofthegeneralmediacoverageofthe differentcancersovertime.Ithasbeendemonstratedthatmedia coveragehasanimpactonthepublicinterestincancer,andone studyfoundthattherewerepeaksincancerrelatedinternetsearch terms followingmediacoverageof famouspersonswithcancer [18].Inoursurvey,healthprofessionalsandinformationbrochures were less reported sources of cancer information compared to media.Therelationship betweenmedia,healthcare information and publicawarenessis likely generalizable betweencountries
where media holds an important status, and is interesting for strategiestoimprovethepublicawarenessofdiseaseingeneral andgynecologiccancersinparticular.This,infact,relatestothe larger issue of health literacy among the general population.
Strengtheningknowledgeonhowahealthierlife-stylewithdiet, exercise and the avoidance of obesity can decrease risk of a multitudeofpathology,includingseveralcancers(egbreast,colon and endometrial cancer), wouldhopefully slow theanticipated increase of these diseases [19]. Our results imply that popular media is an information channel that should be explored for distributing healthinformation rather thanhealth personnelor informationbrochures,toachieveimprovedawareness.
Conclusion
Only41%ofNorwegiancitizensmentiongynecologicalcancers whenaskedaboutwhat cancerstheyhaveheardof,suggesting thatefforts shouldbemadetoincreasetheawarenessof these diseases.Sexandageaffectthelikelihoodofmentioningspecific gynecologic cancers, and media coverage is likely to play an Fig.2. Likelihoodofmentioningspecificcancersbasedonsexandage.Endometrial-,ovarian-andcervicalcancerwereselectedtogetherwithcancertypesmentionedby morethan60%ofrespondents.Logisticregressionanalysesincludingthevariables“sex”,“yearofbirth”,“education”and“totalcancermentioned”wereperformedforeach cancertype.Predictedvaluesforeachcancertypeispresentedbysex(A)andyearofbirth(B).Thegreyareainlinegraphsrepresent95%confidenceintervals.Complete regressiondataavailableinappendixA,TableA3.
important role in what cancer types the public recalls. Future studies should furtherexplore the publicknowledge regarding different aspects of gynecologic cancer (symptoms, treatment options,etc.)toguideinformationstrategies.
Fundinginformation
ThisstudywassupportedbyTheResearchCouncilofNorway (273280),TheNorwegianCancerSociety(190202-2017)andthe UniversityofBergen.TheNCPis financiallysupportedbyTrond Mohn Foundation. Fundingsources had noinvolvement in any partsofthestudy.
DeclarationofCompetingInterest
The authors declare that they have no known competing financial interests or personal relationships that could have appearedtoinfluencetheworkreportedinthispaper.
Acknowledgements
The authorswould liketothankall membersof theBergen GynecologicCancerResearchGroupforcontributingtothedesign of the survey questions. We would also like to thank all respondentsintheNCPpanelforcompletingthesurvey.
AppendixA.Supplementarydata
Supplementarymaterialrelatedtothisarticlecanbefound,in the online version, at doi:https://doi.org/10.1016/j.
ejogrb.2020.10.051.
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