Breast cancer screening uptake in women at increased risk of developing hereditary breast cancer

Breast Cancer Research and Treatment59: 101–111, 2000.© 2000Kluwer Academic Publishers. Printed in the Netherlands.

Report

Breast cancer screening uptake in women at increased risk of developinghereditary breast cancer

Bettina Meiser1, Phyllis Butow2, Alexandra Barratt3, Michael Friedlander1, Judy Kirk4, ClaraGaff5, Eric Haan6, K. Aittomäki5, and Katherine Tucker1

1Hereditary Cancer Clinic, Prince of Wales Hospital, Sydney;2Medical Psychology Unit,3Department of PublicHealth and Community Medicine,4University of Sydney; Familial Cancer Clinic, Westmead Hospital, Sydney;5Victorian Clinical Genetics Services, Melbourne;6South Australian Clinical Genetics Service, Women’s andChildren’s Hospital, Adelaide

Key words:breast cancer screening, hereditary breast cancer

Summary

This multicenter study assessed breast cancer screening uptake in 461 unaffected women at increased risk ofdeveloping breast cancer on the basis of family history who approached familial cancer clinics for advice aboutsurveillance options. At the time of attending the clinic, 89% and 90% of participants were vigilant with respectto age- and risk-specific recommendations for mammography and clinical breast examination, respectively, and51% reported practicing breast self-examination monthly or more frequently. The degree to which health outcomesare perceived to be under one’s personal control (χ2 = −2.09, p = 0.0037) and breast cancer anxiety (χ2 =8.11, p = 0.044) were both associated with monthly or more frequent breast self-examination, while there wereno associations with sociodemographic characteristics. A significantly lower percentage (56%) of women aged<30 were vigilant with respect to mammography recommendations, compared to 77%, 96% and 98% of womenaged 30–39, 40–49 and>50, respectively (χ2 = 37.2, p < 0.0001). These relatively low rates of mammographicscreening in young women may reflect concerns about increased cancer risk associated with early and repeatedradiation exposure or lack of sensitivity in young women with radiographically dense breasts. If mammographicscreening is ultimately shown to lower mortality in women at high risk, there will be a strong case to promotescreening in young women. The need for regular mammographic screening would then need to be highlighted andreinforced amongst young women and their referring physicians. Awareness amongst general practitioners, whoare largely responsible for referral to screening services, would also need to be increased.

Introduction

Evidence from epidemiological studies has been accu-mulating to establish a family history of breast canceras the strongest known risk factor for breast cancer [1].The majority of women with a family history of breastcancer have a single affected first- or second-degreerelative. A smaller group of women have a familyhistory consistent with a hereditary breast cancer syn-drome, which includes the occurrence of breast andrelated cancers in multiple members of two or moregenerations and presentation of breast cancer at anearly age. These women are at significantly increased

risk of developing breast cancer. Two dominantly in-herited breast cancer susceptibility genes with highpenetrance,BRCA1andBRCA2, have been localizedand cloned [2–5]. The exact risks associated with eachgene and specific mutations in these two genes remainuncertain. The estimated risk of breast cancer by age70 associated with mutations inBRCA1andBRCA2is between 56% and 85% [6–8], with the lowest es-timate referring to risk imparted byBRCA1mutationscommon in Ashkenazi Jewish women [8].

The benefit of mammographic screening in womenfrom the general population above the age of 50 isnow well established. However, there is an ongoing

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debate about the efficacy of screening women aged40–49 years. The most recently available data showa 15% reduction in mortality after 13 years [9], al-though it remains unclear to what extent this benefit isactually attributable to mammographic screening after50 years of age [9]. The sensitivity of mammographicscreening in younger women is lower than that in olderwomen, as a result of younger women’s radiograph-ically denser breasts and/or more rapid tumor growth[10].

The evidence on the efficacy of clinical breast ex-amination and breast self-examination in the generalpopulation remains controversial, and many questionsremain about their sensitivity and mortality benefit.Preliminary results from three large-scale random-ized trials, published after the current study was ini-tiated, have failed to show effectiveness of breastself-examination in reducing breast cancer mortality[11–13]. Estimates of the sensitivity of clinical breastexamination vary from 17% to 89%, and sensitivity isaffected by stage and size of cancer [14].

To date the impact of screening on reducing mor-tality from breast cancer screening in high-risk womenis unknown. There have been encouraging results froma screening study among women at high risk of de-veloping breast cancer [15]. In this study a higherproportion of in situ cancers were detected in high-risk women, compared to symptomatic patients froman age-matched risk group (21% vs 4%). Several bod-ies and expert panels have developed guidelines forhigh-risk women [14, 16, 17]. These recommenda-tions for surveillance and prophylactic measures arelargely based on expert opinion, since no controlledtrials have been conducted amongst women at in-creased risk of developing hereditary breast cancer[18]. For carriers and untested women at high risk,the Australian guidelines recommend annual mammo-graphy and clinical breast examination, starting at age40 or five years before the youngest age of onset ofbreast cancer in the family, whichever comes first [16].Monthly breast self-examination starting from earlyadulthood is also recommended.

Breast cancer screening uptake by women with afamily history of breast cancer is well documented[19–30]. However, with the exception of two studies[28, 31], all were US studies. Most studies were basedon samples of women predominantly with just onefirst-degree relative with breast cancer. Findings fromsuch studies cannot be generalized to women with astrong family history of breast cancer. The objective ofour study was to assess breast cancer screening uptake

and vigilance to breast cancer screening recommend-ations and its sociodemographic and psychologicaldeterminants, in a sample of unaffected women witha strong family history of breast cancer outside theUS. All women included in the sample were assessedaround the time of their first familial cancer clinicappointment, and some women may not have beenaware of consensus recommendations for breast can-cer screening. It is acknowledged that participants’vigilance with respect to breast cancer screening mayreflect their own attitudes and those of their physi-cians and the accessibility of breast cancer screeningservices.

Several hypotheses were tested in this study. Incorrespondence with previous empirical evidence [32,33], it was hypothesized that the degree to whichhealth outcomes are perceived to be under one’s per-sonal control would be associated with increased vi-gilance to breast cancer screening recommendations.It has been suggested that very low anxiety may failto motivate breast cancer screening whereas very highanxiety may inhibit it [34, 35]. A curvilinear relation-ship may exist between anxiety and screening behavi-ors, with increasing anxiety promoting screening untilanxiety becomes so overwhelming that it producesavoidance behavior instead [34, 36–38]. However,this hypothesis is currently untested for breast cancerscreening in women with a family history of breastcancer. As previous research showed that vigilance toage-specific breast cancer screening recommendationswas associated positively with educational level andemployment status and negatively with age [20, 24,25, 30], these sociodemographic characteristics werealso included in the analyses.

Patients and methods

Participants

Data were collected as part of a more comprehensiveassessment of attitudes to genetic testing, knowledgeof breast cancer genetics and the impact of genetictesting for breast cancer susceptibility, the results ofwhich will be reported separately. The findings re-ported here are based on a sample of 461 unaffectedwomen with a family history of breast cancer. Womenwho approached one of 14 familial cancer clinics andsix associated outreach clinics in five Australian States(New South Wales, Victoria, South Australia, Queens-land and Western Australia) between November 1996

Screening in women at increased risk 103

and January 1999 were eligible for participation.These familial cancer clinics provide a comprehensiveservice which includes risk assessment, genetic testingif appropriate and advice regarding early detection andprophylactic strategies [16]. Women were consideredineligible for study participation if they had a prior dia-gnosis of ovarian or breast cancer; were unable to giveinformed consent; or had limited literacy in English,since data were collected using self-report question-naires. The study was approved by 16 institutionalethics committees.

Procedure

Familial cancer clinic staff invited women to parti-cipate in the study during the pre-clinic telephonecall, where possible. Questionnaires, consent formsand reply-paid envelopes were then mailed out bythe coordinating research center. Women were sub-sequently telephoned by the central research staff andgiven further information about the study and issuesof informed consent. Women were asked to returnthe completed questionnaire and consent form be-fore attending the familial cancer clinic, if possible.Reminder calls were made as required.

Measures

The following data were collected:

Demographic characteristicsSex, age, educational level, employment status, mar-ital status and number of biological children weremeasured.

Objective breast cancer riskTo provide an estimate of objective risk, clinic staffwere asked to make a judgment on whether a par-ticipant’s family history was either consistent or notconsistent with a dominantly inherited predispositionto breast cancer, and participants were thus classifiedas being at ‘high risk’ or ‘moderately increased risk’,respectively. Following the risk assessment interviewat the familial cancer clinic and once pedigree inform-ation [39, 40] and relatives’ diagnoses confirmed bymedical records were available, clinic staff categorizedparticipants into objective risk groups. For womenfrom high-risk families, clinic staff made a judgmenton whether the participant was at either 50% or 25%mutation carrier risk. For example, an approximate25% mutation carrier risk would apply to a woman

from a high-risk family whose closest affected relat-ive is second degree; or to a woman from a familywith an identified mutation whose closest relative ofknown mutation status is second degree. Risk of beinga mutation carrier, rather than the estimated lifetimerisk of developing breast cancer, was used as a meas-ure of objective risk. This was done because of thecurrent uncertainty associated with risks imparted bybreast cancer gene mutations and the inappropriate-ness of the Claus and Gail models to high-risk women[41, 42]. The expert opinion of clinical geneticistswas used as a gold standard, since there are currentlyno universally accepted standards to estimate ovariancancer risk in high-risk women. Age of the youngestrelative in the family diagnosed with breast cancer wascollected from study participants, because Australianscreening recommendations are determined by the ageof the youngest relative [16].

Perceived likelihood of having inherited a breastcancer mutationOne item asked participants to select their perceivedmutation carrier risk from five response options ran-ging from ‘I am certain that I will not have the gene’to ‘I am certain I will have the gene’.

Multidimensional health locus of control scaleThis 18-item scale measures beliefs about the sourceof control for health-related behavior and consists ofthree subscales [33]. Subscales measure attributionsconceptualized as being under one’s own control (‘in-ternal health locus of control’), as a matter of chanceor under the control of powerful others. Alpha reliab-ility for the subscales was found to range from 0.67 to0.77 in the original validation study [33].

Impact of event scaleThis 15-item scale measures anxiety responses in re-lation to a specific stressor and has well-documentedpsychometric properties [43]. In the current study theparticular stressor was concern about being at riskof developing breast cancer. Scores were summedto provide a total score, with high scores indicatinggreater anxiety.

Breast cancer screening uptakePrior utilization of mammography and clinical breastexamination and practice of breast self-examinationwere assessed. For each screening test, respondentswere asked whether they had ever undergone the

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Table 1. Breast cancer screening vigilance classifications

Breast cancer screening behavior Moderately increased risk High risk

Mammography Aged≥50 years Aged≥40 or not more than five

years younger than the lowest age

of onset of breast cancer in family

Frequency categorized vigilant Biannually or more frequently Annually or more frequently

Clinical breast examination Aged≥ 40 Aged≥ 40 or not more than five

years younger than the lowest age

of onset of breast cancer in family

Frequency categorized vigilant Annually or more frequently Annually or more frequently

Breast self-examination All participants All participants

Frequency categorized vigilant Monthly or more frequently Monthly or more frequently

screening test and to state its frequency in the pastyear.

Data analysis

Three outcome variables were created which classifiedwomen as either hypovigilant or vigilant with respectto recommendations for breast cancer screening, usingthe Australian breast cancer screening recommenda-tions for familial cancer clinics as a benchmark [16,44]. Table 1 provides an overview for the criteriaused for categorization. Women were categorized sep-arately for each breast cancer screening behavior. Ifthey had followed consensus recommendations for aparticular screening behavior in the past year, theywere categorized as vigilant, and if they had not, ashypovigilant.

Descriptive statistics were used to describe thesample in terms of sociodemographic and family his-tory data and uptake of each screening test. Parti-cipants were divided into quartiles on the basis of theirbreast cancer anxiety level to allow the curvilinear re-lationship to be examined. To assess the associationbetween vigilance with respect to each screening testand sociodemographic, objective risk and breast can-cer anxiety group,χ2 analyses were performed. MannWhitneyU tests were carried out for the non-normalinterval variable of ‘internal health locus of control’.Predictors significant atp < 0.1 were entered into alogistic regression. A quadratic term was entered forbreast cancer anxiety to test whether there was a cur-vilinear relationship. To examine the characteristicsof women who over-practiced breast self-examination,the breast self-examination variable was re-coded into

a new binary variable (hypovigilant/vigilant versushypervigilant) andχ2 analyses were repeated.

Results

Characteristics of the sample

Of the 520 women who met the eligibility criteria,59 women declined participation or never returned thequestionnaire (response rate of 89%). Table 2 summar-izes sociodemographic and family history variables ofthe study sample. The median age of the sample was38 years, ranging from 18 to 75. Sixty-eight percenthad post-school qualifications, compared to 37% ofwomen in the general Australian population [45].

The mean age of breast cancer onset in the young-est person in the family was 41 years (SD= 9.6). Thenumber of self-reported first- and second-degree re-latives with a diagnosis of breast or ovarian cancerranged from 1 to 18, with a median of three. Based ondata provided by clinic staff, 351 participants (80.5%)had a family history consistent with a dominantly in-herited predisposition to breast cancer, and 85 (19.5%)were thought to be at moderately increased risk only.Ninety-five women (21%) had a family history whichincluded ovarian cancer in addition to breast cancer.

Seventy-one percent (95% CI, 67–75%) of womenparticipating in the study reported ever having had amammogram, and 60% (95% CI, 54–64%) reportedhaving had at least one mammogram in the past year.Amongst women for whom guidelines recommendedmammographic screening, 89% (95% CI, 86–92%)were found to be vigilant with respect to mammo-graphy. Ninety-three percent (95% CI, 91–95%) re-


Table 2. Sociodemographic and family history variables of study sample(N = 461)

Variable Level N %

Sociodemographics

Age (years) <30 97 21

30–39 157 34

40–49 124 27

50+ 81 18

Marital status Married 295 64

Not married 164 36

Biological children Yes 329 72

No 130 28

Employment status Employed 311 68

Not employed 144 32

Educational level Post-school qualifications 301 68

No post-school qualifications 143 32

Family history variables

Objective risk Moderate risk 85 20

High risk – 25% MCRa 48 11

High risk – 50% MCRa 303 70

No. of FDR & SDR 1–2 135 34

with BrCa or OvCab 3–4 176 44

5–18 87 22

aMCR=mutation carrier risk.bNumber of first-and second-degree relatives with breast or ovarian cancer.

ported ever having had a clinical breast examination,while 84% (95% CI, 79–87%) had at least one clinicalbreast examination in the past year. Amongst womenfor whom clinical breast examination was recommen-ded, 90% (95% CI, 87–93%) of participants werefound to be vigilant with respect to recommendations.While 86% (95% CI, 81–91%) reported examiningtheir breasts, only 51% (95% CI, 46–56%) did somonthly or more frequently.

Tables 3, 4 and 5 show the results of bivariateanalyses on mammography, clinical breast examina-tion and breast self-examination, respectively. Table3 shows that a significantly lower percentage (56%)of women aged<30 were vigilant with respect tomammography recommendations, compared to 77%,96% and 98% of women aged 30–39, 40–49 and>50respectively(χ2 = 37.2, p < 0.0001). Perceivedmutation carrier risk exhibited a trend towards statist-ical significance(χ2 = 5.30, p = 0.071). Womenwho reported being uncertain whether they carried agenetic mutation included the highest percentage ofwomen who were vigilant with respect to mammo-graphy (92%), compared to those who were certainor quite certain that they did not have a mutation

(83%) and those who were certain or quite certain theyhad the mutation (80%). None of the other predictorvariables tested for associations with mammographyvigilance were significant.

Table 4 shows that objective risk exhibited a trendtowards statistical significance with clinical breastexamination vigilance(χ2 = 5.3, p = 0.070).All women at moderately increased risk were vigil-ant with respect to clinical breast examination com-pared to 91% of women at 25% mutation carrierrisk and 88% of those at 50% risk. There were nostatistically significant differences for clinical breastexamination.

Table 5 shows that perceiving health outcomesto be under one’s own control was correlated withbreast self-examination(χ2 = −2.09, p = 0.0037).Although statistically significant, the difference in‘internal health locus of control’ scores between vigil-ant (mean=26.3, SD=4.3) and hypovigilant women(mean= 25.2, SD=5.0) was small. The relationshipbetween breast cancer anxiety group and breast self-examination was also significant, in that women withmoderately high anxiety had the highest percentagereporting breast self-examination (61%), compared

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Table 3. Factors associated with mammography vigilancea

Variable Level N Percentage χ2 p Mean(SD) t-value

(independent variable) vigilant

Age <30 16 56 37.17 <0.0001

30–39 61 77

40–49 94 96

>50 79 98

Educational level No post-school qualifications 86 92 0.98 0.32

Post-school qualifications 155 88

Employment status Not employed 79 94 2.53 0.11

Employed 168 87

Objective risk Moderate risk 16 100 2.28 0.32

High risk – 25% MCRb 23 91


Perceived mutation Certain/quite certain will not have gene 12 83 5.30 0.071

carrier risk Uncertain 199 92

Certain/quite certain will have gene 39 80

Breast cancer Low 64 91 1.58 0.66

anxiety Moderately low 59 92

Moderately high 60 85

High 58 90

Internal locus Vigilance 221 0.44 25.8(4.9) 0.77

of control Hypovigilance 27 26.6(4.7)

aIncludes only women for whom age-and risk-specific guidelines mammography. Sample sizes vary due to missing data.bMCR=Mutation carrier risk.

to women with low (45%), moderately low (45%)and high anxiety levels (53%)(χ2 = 8.11, p =0.044). None of the other variables tested weresignificant.

Practicing breast self-examination more frequentlythan monthly did not show any significant associationswith the variables tested, although a trend towardsstatistical significance was observed for perceivedmutation carrier risk(χ2 = 5.08, p = 0.079). Ahigher proportion of women who over-practiced breastself-examination reported being ‘quite certain/certain’they were carriers (31%), compared to women whowere hypovigilant or vigilant with respect to breastself-examination (19%).

Figure 1 illustrates the relationship between breastcancer anxiety group and each screening behavior. Lo-gistic regression for breast self-examination showedthat the quadratic term of breast cancer anxiety was notsignificant (OR=1.00; 95% CI 1.00, 1.00;p = 0.1),while controlling for age and ‘internal health locusof control’. However, the linear relationship betweenbreast cancer anxiety and breast self-examination wassignificant(p = 0.03).

Discussion

This study is the first to report data on breast cancerscreening uptake in an Australian sample of women atincreased risk of developing hereditary breast cancer.Compared to recent breast cancer screening data onwomen in the general Australian population [46], self-reported uptake of both mammography and clinicalbreast examination was notably higher in the studypopulation. Amongst women in the general popula-tion aged 30–69, 55% reported ever having had amammogram and 54% having had a clinical breastexamination at least once in the past year [46], com-pared to 84% and 88% of women aged 30–69 in-cluded in our sample, respectively. These findingsstrongly suggest that having a family history of breastcancer increases breast cancer screening uptake, sup-porting previous evidence demonstrating a positiverelationship between family history and breast cancerscreening [47].

Monthly or more frequent breast self-examinationin the current sample (51%) is comparable to that ofwomen in the general population (50%) [46]. Given


Table 4. Factors associated with clinical breast examination vigilancea

Variable Level N Percentage χ2 p Mean(SD) t-value


Age <30 16 88 0.53 0.91

30–39 61 92

40–49 118 91

>50 80 89




Employed 185 89










High 66 96

Internal locus Vigilance 246 0.64 26.1(4.8) −0.46

of control Hypovigilance 27 25.7(5.6)

aIncludes only women for whom age-and risk-specific guidelines recommend clinical breast examination. Sample sizes vary due tomissing data.bMCR= Mutation carrier risk.

the high percentages of high-risk women who re-ported having undergone mammography and clinicalbreast examination, the low rates of regular breast self-examination practice amongst high-risk women arestriking.

Comparisons with studies in the US

Interestingly, the Australian sample had the highestpercentages of women being vigilant with respect tomammographic screening (89%) and clinical breastexamination (90%) recommendations compared toearlier studies. Previous studies show that the percent-age of women with a family history of breast cancerwho reported having had a mammogram in the pastyear ranged from 14% to 65% [19–28]. The per-centage of those vigilant with respect to age-specificmammography recommendations ranged from 15%to 79% [20, 24, 25, 30], with the highest percent-age referring to first-degree relatives of breast cancerindex patients [25]. Published studies show that theproportion of women reporting clinical breast examin-ation in the past year ranged from 52% to 84%, andthat between 52% and 87% of at-risk women were

vigilant with respect to clinical breast examinationrecommendations [19–21, 24, 26, 27].

There are several factors which may account forthe high rates of mammography and clinical breast ex-amination in the Australian sample. Culture-specificattitudes may impact on breast cancer screening up-take. Our study is more recent – all other studiesreviewed were published between 1991 and 1996. Thebreast cancer advocacy movement and, in particular,the recent media attention on genetic factors contribut-ing to breast cancer, may have led to increased breastcancer screening uptake in recent years. Perhaps themost likely reason relates to cost. In Australia, thegovernment-funded Breast Screen program providesfree two-yearly screening mammograms to all wo-men aged 40 and over. For women below age 40with a family history of breast cancer, breast cancerscreening services are available through public hos-pitals at no cost or through private services with atleast a 75% rebate through the government-fundedMedicare system. By contrast, the US has a privateinsurance system with fewer incentives to undertakescreening. Indirect evidence exists which supports thelatter explanation. Specifically, several US studies

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Table 5. Factors associated with monthly or more frequent breast self-examinationa

Variable Level N Percentage χ2 p Mean (SD) z score


Age <30 92 45 2.47 0.48

30–39 150 54

40–49 124 53

>50 80 49




Employed 302 50










High 105 53

Internal locus Hypervigilance 55 0.047 26.3(4.6) 3.07

of control Vigilance 171 26.4(4.1)

Hypovigilance 27 25.2(5.0)

aSample sizes vary due to missing data.bMCR=Mutation carrier risk.

Figure 1. Breast screening vigilance by breast cancer anxiety level.

found that vigilance to mammography recommenda-tions was associated positively with income [20] andbeing employed [25, 30], while our data did not reveala significant relationship between employment statusand vigilance.

Previous studies reported the proportion of wo-men who practiced breast self-examination monthlyor more frequently as ranging from 27% to 66% [19–

21, 23, 26–31], compared to 51% in the Australiansample. In contrast to the high rates of mammographyand clinical breast examination uptake in the Aus-tralian sample, compared to overseas data, breast self-examination vigilance rates appeared similar. Com-parable rates of breast self-examination vigilance alsosupport the above explanation for differential ratesof mammography and clinical breast examination –breast self-examination is an activity which incursno financial cost and, therefore, is unlikely to bea function of differing government health insurancepolicies.

Determinants of breast self-examination

There are several factors which may account for rel-atively low rates of breast self-examination, includinglack of confidence in one’s ability to perform it, pres-ence of lumpy breasts and/or lack of evidence of itsbenefit. Furthermore, psychological factors are likelyto play an important role in breast self-examination,given that women are required to maintain a behaviorthat may receive little external reinforcement becauseof its private nature [48]. As hypothesized, perceiving


health outcomes to be under one’s personal controlwas found to be significantly associated with practiceof breast self-examination monthly or more frequently.Although the difference in ‘internal health locus ofcontrol’ scores between those who practiced breastself-examination and those who did not was small,our findings confirm previous evidence suggesting thatindividuals with an ’internal health locus of control’are more likely to engage in protective health behavi-ors [32, 33]. The positive linear association betweenbreast self-examination and breast cancer anxiety sug-gests that anxiety promotes practice of breast self-examination. This corresponds to findings of previousstudies [47, 49]. However, our data did not supportthe idea of a curvilinear relationship. Thus even highlevels of breast cancer anxiety do not appear to inhibitbreast self-examination.

While these findings do not have any practicalimplications due to the lack of efficacy of breastself-examination, they are of theoretical interest. Ourfindings show that women’s psychological charac-teristics are more powerful determinants of breastself-examination than objective breast cancer risk andsociodemographic characteristics. Practice of breastself-examination appears to be motivated by a per-ceived increase of control over one’s health [50]. Ourresults also show that breast cancer anxiety increasesregular breast self-examination. Thus women maypractice breast self-examination to obtain relief fromanxiety and feel reassured.

Determinants of mammography and clinical breastexamination vigilance

Our findings show that, with the exception of age,none of the variables measured were associated withvigilance to mammography recommendations. Wo-men below age 30 for whom consensus guidelinesrecommend mammographic screening were least vi-gilant. The positive association between age and vigil-ance to mammography contradicts findings reported inseveral US studies, which consistently show that olderwomen at increased risk are less likely to be vigilantwith respect to mammography recommendations [20,24, 25, 30].

None of the hypothesized psychological or so-ciodemographic variables were associated with vigil-ance to recommendations for clinical breast examin-ation. Lack of association of psychological predictorvariables with clinical breast examination and mam-mographic screening vigilance raises the possibility

that physician recommendation may be a more power-ful determinant for both screening behaviors. Severalstudies have found that physician recommendation formammography is strongly associated with use of, orintention to undergo mammography (see Cockburn,1989, and Vernon, 1990, for a review of the literature)[50, 51].

This study is the first to document breast cancerscreening uptake in a large sample of women with afamily history of breast cancer outside the US. Ourdata show that mammography vigilance was relativelylow in women in their twenties and, to a lesser ex-tent, women in their thirties. There are several factorswhich may account for these relatively low mammo-graphic screening rates in young women. Women wereassessed around the time of their first familial cancerclinic appointment and may not have been aware ofconsensus recommendations regarding screening forbreast cancer. Physicians may not recommend screen-ing either because of concerns about increased cancerrisk associated with early and repeated radiation ex-posure or lack of sensitivity in young women withradiographically dense breasts or because they are notaware of a particular woman’s increasedrisk.

The evidence of benefit of mammography in high-risk women is controversial. In the absence of dataon the efficacy and potential harms of mammographicscreening in high-risk women, decisions about op-timal care are difficult for both women and their doc-tors. Thus many women may try to make a decisionabout screening under conditions of uncertainty andmay benefit from discussing their concerns. Effortsaimed at increasing mammographic screening ratesshould await further evidence demonstrating the effic-acy of screening high-risk women. If mammographicscreening is ultimately shown to lower mortality inwomen at high risk, there would be a strong case topromote mammographic screening in young women.The need for regular mammographic screening wouldthen need to be highlighted and reinforced amongstyoung women and their referring physicians. Aware-ness amongst general practitioners, who are largelyresponsible for referral to screening services, wouldalso need to be increased.

The limitations of this study should be noted.The disadvantages of self-report data are well docu-mented [52]. However, studies assessing the validityof self-reported mammography uptake found closecorrespondence with data obtained from screeningagencies [46, 53], and provide support for the validityof our findings. Another limitation relates to the cross-

110 B Meiser et al.

sectional design of the study. Prospective data arebeing collected on the sample. Due to the clinic-basedrecruitment, the sample may not be representative ofhigh-risk women as a whole. Specifically, it is pos-sible that women who approach familial cancer clinicsmay be more vigilant in their screening behaviors.Finally, the sample had high educational levels, ashas also been found in other studies assessing wo-men attending familial cancer clinics [54]. The higheducational levels suggest that generalizations to thebroader population of women at increased risk of de-veloping hereditary breast cancer need to be madecautiously. Nonetheless, due to the high participationrate (89%), findings are highly relevant to those wo-men who are most likely to seek information aboutsurveillance options from familial cancer clinics.

Acknowledgements

The authors would like to thank the following indi-viduals for their contributions to this study: ProfessorsRobert A. Boakes and Stewart Dunn and Dr VivienneSchnieden for their methodological advice; MoragClifton, for data collection and management; Dr Mag-gie Watson, for generously discussing similar work;Dr Jack Chen for statistical advice; Meryl Smith, Mar-garet Gleeson, Karen Harrop, Helen Hopkins, AnnetteHattam, Lucille Stace, Julie White, Anne Baxendale,Susan White, Step Daly, Mary-Anne Young, Bron-wyn Burgess, Monica Tucker and Drs Michael Gattas,Graeme Suthers, Agnes Bankier, Ian Walpole, AlisonColley, Mac Gardner, Tracy Dudding, Jack Goldblatt,Elizabeth Thompson and Professor Gillian Turner forassistance with patient recruitment, data collection andthe ethics application process. Finally, we are mostgrateful for the valuable contribution of all the womenwho participated in this study. This research was sup-ported by Project Grant No. 970929 from the NationalHealth and Medical Research Council of Australia.

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Address for offprints and correspondence:Katherine Tucker,Hereditary Cancer Clinic, Prince of Wales Hospital, Randwick,NSW 2031, Sydney, Australia;Tel.: 0061-2-9382-2577;Fax:0061-2-9382-2588;E-mail: [email protected]

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Breast cancer screening uptake in women at increased risk of developing hereditary breast cancer