Susan C. Harvey|Aimee M. Gallagher|Martha R. Nolan|Christine M. Hughes
Listening to Women: Expectations and Experiences in Breast Imaging
Johns Hopkins University|Society for Women's Health Research|Society for Women's Health Research
journal womens healthvol 24 9 report society womens health researchopen accesslistening women expectations experiences breast imagingsusan harvey aimee gallagher martha nolan christine hughessusan harveydirector breast imaging russell h morgan department radiology radiological science johns hopkins medical institutions baltimore marylanddr harvey ms gallagher senior coauthors contributed equally manuscriptsearch papers author aimee gallaghersociety womens health research washington dcdr harvey ms gallagher senior coauthors contributed equally manuscriptsearch papers author martha nolansociety womens health research washington dccurrent affiliation takoma park marylandsearch papers author christine hugheshadley hart group chicago illinoissearch papers authorpublished online21 sep 2015httpsdoiorg101089jwh201529001swhaboutsectionspdfepub toolspermissionsdownload citationstrack citationsadd favorites back publication shareshare onfacebooktwitterlinked inredditemail introductionthose discuss breast cancer detection diagnosis women know many patients misconceptions anxieties mammography patients may misunderstand screening recommendations primary care provider receive misinformation friends family sources women might confused changes updates official recommendations frequency screening mammography age begin obtaining mammograms still others might aware breast cancer mammography screening coverage patient protection affordable care act aca requiring new private insurance medicare plans eliminate costsharing patients furthermore healthcare providers add confusion informed latest guidanceanxiety breast cancer screening occur especially women called back additional tests based inconclusive mammogram recent database review 1723139 women received screening mammogram january 2011 june 2013 alcusky colleagues found 15 recalled1 studies reported recall rates 101423 recalls result false positives meaning additional testing ultimately yielded benign outcome additional tests include diagnostic mammography breast ultrasound breast biopsy magnetic resonance imaging majority recalls reveal normal tissue cysts benign processes4 denser breast tissue58 annual mammograms woman greater probability callback false positive finding false positives shown increase patient anxiety short term9 temporarily reduce quality life10 lead worries breast cancer last several years beyond resolution false positive diagnosis11anxiety fear reported major impact breast cancer screening behaviors12 harvey colleagues note recent report behaviors responses healthcare screenings vary based raceethnicity socioeconomic factors13 perhaps helping explain greater fear healthcare system among africanamerican women14 undoubtedly plays role africanamerican women present diagnosis later stages breast cancer15 know almost women experience increased anxiety faced finding possible breast screening abnormality16breast cancer common cancer us women17 national cancer institute nci national institutes health projects 231840 new cases breast cancer us women 40290 deaths disease 201518 nci estimates 123 1 8 us women average risk diagnosed breast cancer lifetime mortality breast cancer decreased significantly since 1990 probably related improved mammography technology detection increased public awareness value screening effective treatments despite improvements breast cancer remains serious health concern second leading cause cancer death among women one notable exception hispanic women breast cancer number one cause cancer death17mammography screening highly effective detecting existing disease reducing mortality associated 19 reduction breast cancer deaths19 likelihood mammography detect existing breast cancer 70 90 women exception women dense breast tissue sensitivity falls 30 4820 newer screening technologies including digital breast tomosynthesis dbt may yield even better results technology ability increase invasive cancer detection decrease false positive results42124in 2014 society womens health research conducted national survey assess womens knowledge attitudes regarding mammography sought identify misunderstandings mammography among women different racialethnic age groups sought identify barriers keep women seeking screening mammography motivators would propel women toward screening queried participants emotional responses recalled followup diagnostic testing might lead use one mammography center another breast cancer screeningour results clearly showed areas successes areas challenges results demonstrate opportunities potential ways forward improve access utilization screening mammography authors believe improved access utilization paired new technologies may potential improved outcomesmethodsto assess knowledge attitudes behaviors women us relative mammography engaged phoenix marketing international rhinebeck new york design administer survey questionnaire survey conducted september october 2014 sample 3501 women four age groups1839 years n 357 4050 n 947 5164 n 1243 6593 n 954and varied raceethnicity women youngest age group likely referred mammography healthcare provider high risk breast cancereligible women participated internet via telephone interviews personal intercepts public locales participants completed survey averaged around 15 minutes online person 30 minutes phone survey administered english spanishquotas set number areas ensure similarity 2010 us census mammogram utilization rates selection participants skewed toward women least one mammogramthe survey questionnaire pilot tested modified improve clarity final questionnaire contained questions assess knowledge benefits mammography health insurance coverage aca assess barriers motivators acquiring mammogram assess women want insurance coverage technology advances relates feelings acquiring screening mammogram called back additional diagnostic testing questionnaire consisted 10 screening questions ethnicity income age make sure sample quota met 39 survey questionsparticipants selfidentified hispanic black african american asian white american indian alaskan native native hawaiian pacific islander multiracial purposes data analysis hispanic black african american white women grouped othershispanic black women intentionally oversampled better reveal differences knowledge attitudes behaviors toward mammography data weighted account oversampling sample intentionally represent us population womencomparisons made across wide range demographic characteristics comparisons included health literacy history mammography breast health health insurance statistical comparisons data cuts made 95 confidence level margin error full sample women 166 margin error among black women 473 among hispanic women 406the women queried health insurance status insured uninsured comparisons frequency mammogram eg often get mammogram also asked rate items list possible impediments scheduling keeping appointment mammography eg high cost lack adequate health insurance lack transportation lack child care items rated scale 010 0 strongly disagree 10 strongly agreeadditional questions sought determine womens knowledge importance timing mammography awareness nocosttopatient coverage provided benefit aca motivators barriers seeking mammographymammography literacy determined participants responses questions health benefits risks associated mammography eg one normal mammogram dont need anotherknowledge aca benefit aca literacy determined respondents answering yes question asking aware mammography provided cost part affordable care act aca preventative services benefits aca awareness mammography literacy compared across racialethnic age groups according whether women prior mammogramparticipants presented list possible motivators eg healthcare providers recommendation friends recommendation breast cancer awareness ads scheduling mammography asked rate motivators scale 010 findings stratified raceethnicity women also asked respond list items would affect selection site mammography serviceswomen reported prior mammogram also questioned response ie scared stressed sad angry callback additional testing degree interest advanced breast screening technologies would lower likelihood callback spss software ibm corporation armonk ny marketsight software marketsight llc newton used conduct data analysisresultsa total 3501 women participated survey providing information knowledge attitudes behaviors relative mammography women participated weighting approach intentionally employed skewed sample include women least one mammogramthe majority 63 age 51 years older table 1 representing us mammogram incidence small number 10 represented younger demographic age 1839 referred mammography provider participants selfidentified hispanic black white table 1table 1 participants age raceethnicityagehispanicblackwhiteothertotal 1839683621142357 10405015512061854947 275164208157832461243 366515111665829954 27total58242923191713501 100although women strongly agree mammograms important many actually getting participants rated importance mammography 010 scale either agreed 810 rating mammography important felt neutral disagreed 07 seventyeight percent 78 agreed mammography conducted addition breast exam healthcare provider breast selfexam slightly half 54 reported annual mammogramwomen health insurance two times likely uninsured counterparts annual mammogram 57 vs 23 respectively sources health insurance employer labor union healthcare exchange individual family business medicare medicare supplemental plan medicaid militaryus department veterans affairs full 30 uninsured women report never mammogram compared 10 insured women among uninsured insured women mammograms 23 former report 5year gap mammograms compared 9 among latter fig 1fig 1 insured women uninsured women mammograms similarly likely undergo mammography every 25 years 25 24 respectively uninsured created disparity ever never mammogram 30 uninsured women compared 10 insured women report never mammogramprimary barriers scheduling attending mammography appointments among women mammograms high cost 16 lack adequate insurance coverage 16 components cost included travel cost wages lost child care unspecified costs younger women hispanic women report greater cost issues across boardthe leading secondary barriers hispanic women way inconvenient unable get referral black women secondary barriers mainly lack transportation unable get information cost white women others report way inconvenient lack transportation leading secondary barriersto assess health literacy regard mammography women asked agree agree regarding statements mammography table 2 thirtysix percent 36 women correctly answered least six seven questions table 2 thirtytwo percent 32 aware mammography nocosttotheconsumer preventative services benefit aca majority 63 women unaware aca nocost provision 5 unsuretable 2 seven questions pertaining mammography benefitsaca1 following statements mammography agree prevents risk getting breast cancer reduces risk getting breast cancer effect risk getting breast cancerrate level agreement following statements2 mammography important examination conducted addition one made health care provider woman herself3 mammogram find something late4 one normal mammogram dont need another5 dont need mammogram dont symptoms6 amount radiation exposure mammogram small benefits important risks7 aware mammography provided cost part affordable care act aca preventative services benefits yes aware wasnt aware dont think truecorrect answers 010 scales means one three points selected correct end scale questions 26a breakdown age showed women 50 women prior history mammography slightly better knowledge mammography see table 2 questions women 4050 age group women 50 without prior mammography less aware aca mammography coverage younger women prior mammogram represent opportunities educational outreachasked rate 10 possible reasons scheduling obtaining mammogram majority respondents said recommendation healthcare provider 56 reminder assistance scheduling annual checkup 53 greatest motivators somewhat lesser motivators personal medical history 40 family history breast cancer 38 concern based selfexam 37 breast cancer awareness ads information 33 family recommendation 32 close friends history breast cancer 26 friends recommendation 24 insurance company reminder 22the impact motivators scheduling obtaining mammogram differed raceethnicity fig 2 greatest difference seen influence family breast cancer awareness ads information hispanics blacks compared whitesfig 2 motivators scheduling mammograms differ raceethnicityasked importance four specific factors mammogram rated important mammography covered insurance 88 better earlier detection 88 fewer unnecessary tests 82 lower outofpocket costs 79asked factors would likely make want go certain mammography center least likely make want go highestranked positive factors fully covered insurance best medical equipment among least important factors convenient parking recommendations friends familythe emotional impact receiving callback additional testing assessed among 47 women reported ever received call eightynine percent 89 false positives adjectives often attributed women recalled followup testing scared stressed sad angry scared stressed common responses emotional impact greatest among women 40s fig 3fig 3 emotional impact called back testing pronounced among women 40s following initial mammogrameightytwo percent women consider important access mammogram could lower chance come back tests 81 consider important access mammogram better chance current mammograms finding breast cancer asked whether would switch insurance companies one insurer covered newest technology 20 said would likely 47 said somewhat likely 32 said likelydiscussionthe current survey assesses knowledge attitudes behaviors women united states relative mammography majority 78 3501 participants indicated strongly believe mammography important survey also showed understanding benefits mammography low 36 especially among hispanic womenthe main impediments women report obtaining regular mammograms high cost lack adequate insurance 32 participants knew mammography provided cost patients aca insurance coverage education also key factors underutilization mammography group womenthe common motivators obtaining mammography healthcare providers recommendation scheduling reminder schedule mammogram annual checkup useful information direct primary care providers importance remindersfortyseven percent women surveyed reported received callback time additional testing 89 determined ultimately benign outcome emotional impact callback pronounced particularly women 40 50 80 women expressed interest access mammograms improve detection reduce risk false positives data show educating women equipment available skill breast imager interpreting exam critical experiencein 2007 nci centers disease control prevention noted decline mammography rates 2000 200525 soon afterward swhr brought concerns finding attention us house representatives congressional briefing focused 1 ensuring federal funding research development improved techniques screen breast tissue 2 ensuring ability women access accredited radiology facilities mammography capability 3 appropriate reimbursement rates centers medicare medicaid services mammography screening imaging 4 comprehending impact future health outcomes issues addressedrecently published research confirms downward trend mammography screening rates particularly among white latina asian women26 findings survey low health literacy regard mammography well barriers scheduling obtaining mammogram may help explain decline goal healthy people 2020 breast cancer screening rate 81127 thus current data indicate continued importance addressing barriers motivators mammography screening among lesser barriers obtaining regular mammograms transportation scheduling time away work inability obtain information schedule appointment lack child caremammography literacy varied age cohort women aged 40 50 less likely understand health benefits mammography 31 women 5164 39 65 older 42 trend held awareness aca coverage mammography interestingly women prior mammogram nearly three times likely understand mammography health benefits suggesting mammography appointment could valuable opportunity educational outreachemotions play important role healthcare utilization avoidance12 callback additional screening rule suspicious finding mammogram source considerable fear anxiety women according survey reports14 impact fear anxiety small matter patients28 affect family friends work aspects wellbeing could conceivably contribute uncertainty accuracy value breast cancer screening brodersen siersma found evidence harmful impact inner calmness false positive screening mammograms far 3 years afterward11 effect could longer study looked 3year window false positive resultover 80 women current survey said would value accurate mammogram eliminates callbacks increases detection national callback rate united states double united kingdom29 2010 cost callbacks united states 16 billion30 important reduce callback rate cost reasons along protecting womens healththe authors believe newer breast screening technologies like dbt potential provide much needed change shown improve breast cancer detection rates reduce callbacks30 important note survey participants fully aware potential benefits potential risks additional costs newer technologies survey shows better detection breast cancer fewer unnecessary recalls women seek421243135this study several limitations findings may underrepresent patients access healthcare services received recommendation mammogram healthcare professional speak english spanish limited access internet telephone among reasons question frequency mammography compare rate annual mammograms belief importance mammography take account many insurance payers permit patients schedule mammograms entire calendar year passed previous exam consequently women view annual visit may stretch 1824 month intervals current us preventive services task force recommendations 2year intervals normalrisk womencertain incidence prevalence rates gleaned findings taken understanding limitations sample research intentionally represent us population womenthe survey showed women would highly value mammography would increase breast cancer detection reduce false positive resultsconclusionour data showed significant barriers screening mammography perception high cost lack adequate insurance coverage despite mandated coverage screening mammography aca findings confirm evidence aca policy yet intended effect removing patient barriers mammography screening24the survey showed women want better accuracy screening mammogram fewer additional diagnostic tests authors believe expanded use advanced breast imaging technology would address issuesthe motivating reason scheduling mammogram women survey recommendation healthcare provider opportunity educational outreach use mammography servicesthe data indicate continuing need improve education costs insurance coverage screening mammography inform women new technologies available may improve breast cancer detection may reduce frequent costly stressful additional diagnostic evaluationsacknowledgmentsthe authors gratefully acknowledge elaine richman phd presenting survey findings publicationauthor disclosure statementdr harvey received honorarium mary ann liebert inc publishers participation society womens health research swhr given grant support programmatic work related womens attitudes knowledge breast cancer screening hologic inc dr harvey ms gallagher received direct remuneration hologic inc martha nolan financial conflicts disclose ms hughes contracted swhr article mary ann liebert inc publishers received grant hologic inc revise edit articlereferences1 alcusky philpotts l bonafede et al patient burden screening mammography recall j womens health 201423s11s19 link google scholar2 rauscher gh murphy orsi jm et al beyond mammography quality standards act measuring quality breast cancer screening programs ajr 2014202145151 crossref medline google scholar3 gur sumkin jh hardesty la et al recall detection rates screening mammography cancer 200410015901594 crossref medline google scholar4 friedewald sm rafferty ea rose sl et al breast cancer screening using tomosynthesis combination digital mammography jama 201431124992507 crossref medline google scholar5 kerlikowske k zhu w hubbard ra et al breast cancer surveillance consortium outcomes screening mammography frequency breast density postmenopausal hormone therapy jama intern med 2013173807816 crossref medline google scholar6 elmore jg barton mb moceri vm et al tenyear risk false positive screening mammograms clinical breast examinations n engl j med 199833810891096 crossref medline google scholar7 hubbard ra kerlikowske k flowers ci yankaskas bc zhu w miglioretti dl cumulative probability falsepositive recall biopsy recommendation 10 years screening mammography cohort study ann intern med 2011155481492 crossref medline google scholar8 independent uk panel breast cancer screening benefits harms breast cancer screening independent review lancet 201238017781786 crossref medline google scholar9 toteson fryback dg hammond cs et al consequences false positive screening mammograms jama intern med 2014174954961 crossref medline google scholar10 hafslund b nortvedt mw mammography screening perspective quality life review literature scand j caring sci 201423539548 crossref google scholar11 brodersen j siersma vd longterm psychosocial consequences false positive screening mammography ann fam med 201311106115 crossref medline google scholar12 consedine ns magai c krivoshekova ys et al fear anxiety worry breast cancer screening behavior critical review cancer epidemiol biomarkers prev 201413501510 google scholar13 harvey sc vegesna mass et al understanding patient options utilization patterns burdens associated breast cancer screening j womens health 200423s3s9 google scholar14 peek sayad jv markwardt r fear fatalism breast cancer screening low income africanamerican women role clinicians health care system j gen inter med 20082318471853 crossref medline google scholar15 centers disease control prevention breast cancer young african american women available wwwcdcgovhealthcommunicationtoolstemplatesentertainmentedtipsbreastcancerafricanamericanhtml accessed august 28 2015 google scholar16 bolejko zackrisson hagell p wannhansson c roller coaster emotions sensecoping perceived psychosocial consequence false positive screening mammography j clin nurs 20142320532062 crossref medline google scholar17 centers disease control prevention cancer among women available wwwcdcgovcancerdcpcdatawomenhtm accessed august 18 2015 google scholar18 national cancer institute seer stat fact sheets breast cancer available httpseercancergovstatfactshtmlbreasthtml accessed march 11 2015 google scholar19 pace le keating nl systematic assessment benefits risks breast cancer screening decisions jama 201431113271335 crossref medline google scholar20 kelly km dean j comulada ws lee sj breast cancer detection using automated whole breast ultrasound mammography radiologically dense breasts eur radiol 201020734742 crossref medline google scholar21 skaane p bandos ai gullien r et al comparison digital mammography alone digital mammography plus tomosynthesis population based screening program radiology 20132674756 crossref medline google scholar22 rose sl tidwell al ice mf nordmann sexton r song r reader study comparing prospective tomosynthesis interpretations retrospective readings corresponding ffdm examinations acad radiol 20142112041210 crossref medline google scholar23 skaane p bandos ai gullien r et al prospective trial comparing fullfield digital mammography ffdm versus combined ffdm tomosynthesis populationbased screening programme using independent double reading arbitration eur radiol 20132320612071 crossref medline google scholar24 ciatto houssami n bernardi et al integration 3d digital mammography tomosynthesis population breastcancer screening storm prospective comparison study lancet oncol 201314583589 crossref medline google scholar25 breen na cronin k meissner hi et al reported drop mammography cause concern cancer 200710924052409 crossref medline google scholar26 wharam jf landon b zhang f xu x soumerai rossdegnan mammography rates 3 years 2009 us preventive services task force guidelines changes j clin oncol 20153310671074 crossref medline google scholar27 office disease prevention health prevention healthy people 2020 objective data search wwwhealthypeoplegov2020datasearchsearchthedatanid4055 accessed may 1 2015 google scholar28 brewer nt salz lillie se systematic review longterm effects false positive mammograms ann intern med 2007146502510 crossref medline google scholar29 smithbindman r chu pw miglioretti dl et al comparison screening mammography united states united kingdom jama 200329021292137 crossref medline google scholar30 odonoghue c eklund ozanne em esserman lj aggregate cost mammography united states comparison current practice advocated guidelines ann intern med 2014160145153 crossref