The Breast 22 (2013) 395e404
Contents lists available at SciVerse ScienceDirect
The Breast
journal homepage: www.elsevier.com/brst
Review
Perceived risk and adherence to breast cancer screening guidelines
among women with a familial history of breast cancer: A review of
the literature
a,b,* a,b b,c d,e
Meghan J. Walker , Anna M. Chiarelli , Julia A. Knight , Lucia Mirea ,
c a,f
Gord Glendon , Paul Ritvo
a
Prevention and Cancer Control, Cancer Care Ontario, Toronto, Ontario, Canada
b
Division of Epidemiology, Dalla Lana School of Public Health, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
c
Samuel Lunenfeld Research Institute, Mount Sinai Hospital, Toronto, Ontario, Canada
d
Maternal-Infant Care Research Centre, Mount Sinai Hospital, Toronto, Ontario, Canada
e
Division of Biostatistics, Dalla Lana School of Public Health, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
f
Faculty of Health, School of Kinesiology and Health Science, York University, Toronto, Ontario, Canada
a r t i c l e i n f o a b s t r a c t
Article history:
Objectives: A small positive association has been consistently demonstrated between perceived breast
Received 30 August 2012
cancer risk and mammography use. Evidence specific to women with familial breast cancer risk has not
Received in revised form
been previously reviewed.
12 October 2012
Methods: A literature search was conducted. 186 studies were identified for abstract/full-text review, of
Accepted 17 December 2012
which 10 articles were included. Manual searching identified 10 additional articles. Twenty articles
examining the association between perceived breast cancer risk and adherence to mammography,
Keywords:
clinical breast examination (CBE) or breast self-examination (BSE) guidelines among women with
Breast cancer
familial breast cancer risk were reviewed. Studies were classified according to screening modality,
Perceived risk
categorized by finding and ordered by year of publication. Studies assessing mammography were further
Screening
classified according to the applied method of measuring perceived risk.
Mammography
Family history Results: Our review found a weak positive association between higher perceived risk and adherence to
Review
mammography guidelines among women with familial breast cancer risk. Consistent associations
between perceived risk and adherence to CBE and BSE guidelines were not observed.
Conclusions: Our ability to understand the relationship between perceived breast cancer risk and
adherence to breast screening guidelines is limited, because most previous research is cross-sectional.
Future studies with prospective methodologies that use consistent measurement methods and are
adequately powered are warranted.
Ó 2013 Elsevier Ltd. All rights reserved.
Introduction Two high-risk cancer-disposing genes, BRCA1 and BRCA2, have
been identified, with carriers at an estimated 40e70% risk of
Breast cancer is the leading incident cancer and cause of cancer- developing breast cancer.5e8
related mortality among women worldwide.1 Having a family Mammography screening has been demonstrated to reduce
history of breast cancer has been established as one of the most breast cancer mortality among average risk women aged 50e74
important risk factors for breast cancer. Specifically, women with an years.9 Similar benefits have not been established for clinical
affected first-degree relative have approximately twice the risk of breast examination (CBE) and breast self-examination (BSE).10e12
developing breast cancer and risk is increased when more than one Breast cancer screening guidelines for women at increased risk,
relative is affected or the relative is younger at age of diagnosis.2e4 based on expert opinion, typically include annual screening with
mammography and CBE starting prior to age 50.13e17 The American
Cancer Society recommends annual breast MRI for identified BRCA1/
* Corresponding author. Prevention and Cancer Control, Cancer Care Ontario, 620
2 mutation carriers, untested first-degree relatives of carriers and
University Avenue, 11th Floor, Toronto, Ontario M5G 2L7, Canada.
women identified to have a 20e25% lifetime risk of developing
E-mail address: [e-mail] (M.J. Walker).
0960-9776/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.breast.2012.12.005
396 M.J. Walker et al. / The Breast 22 (2013) 395e404
breast cancer.18 The National Hereditary Cancer Task Force in Canada Materials and methods
also recommends annual mammography and breast MRI for BRCA1/
2 mutation carriers aged 30e69 years.19 BRCA1 mutation carriers are Search strategy
additionally recommended to undergo transvaginal ultrasounds and
evaluation of Cancer Antigen-125 (CA-125) blood serum levels every Searches of the following databases were performed: PubMed,
6e12 months from age 25 to 35 years for ovarian cancer.20,21 PsycINFO (1960e2011), EMBASE (1980e2011) and The Cochrane
While results from one meta-analysis suggest a positive rela- Library. Queries were conducted of article titles, abstracts and
tionship exists between familial breast cancer risk and mammo- keywords employing combinations of the following terms: breast
gram use,22 many of these studies measured ever-use of screening cancer or breast neoplasm or mammary cancer and perceived risk or
as opposed to guideline adherent use. Recent results examining risk perception or attitudes and breast screening or early detection or
screening adherence among women with familial breast cancer health behaviour or surveillance or mammography or breast self-
risk have been mixed. One Australian population-based study of examination or clinical breast examination and family history or
women of multiple-case breast cancer families demonstrated high family members or at-risk population. No restrictions were placed on
adherence (74%) to mammography guidelines.23 Several recent publication year or sample size, however studies were restricted to
North American population-based studies however, have demon- those with observational designs, published in English and female
strated relatively lower rates of adherence, one indicating only 40% subjects.
of women with familial risk had obtained a mammogram in the
previous 11 months,24 and the other indicating only 36.1% of Selection criteria
women at low familial risk and 55.5% at moderate to high familial
risk had undergone mammography in the previous 12 months.25 The full selection process is shown in Fig. 1. Initial queries
An inverted u-shaped relationship has also been suggested,26 identified a total of 313 articles from PubMed (n ź 93), PsycINFO
wherein women at the extreme ends of risk may screen less, in (n ź 75), EMBASE (n ź 141) and The Cochrane Library (n ź 2).
a relationship influenced by worry.27,28 Duplicates were removed (n ź 127), leaving 186 studies. Titles and
Breast cancer screening requires behavioural action at the abstracts were screened. Full text review was conducted where the
individual level. As such, understanding the factors which influence paper passed eligibility screening or the abstract did not provide
screening uptake is critical to increasing rates of adherence to sufficient information to determine eligibility. Articles were
screening guidelines. There is an extensive literature focusing on excluded if they: focused on cancer at a site other than the breast,
the relationship between perceived susceptibility to breast cancer did not assess the relationship between perceived risk and
and breast cancer screening behaviours. The construct of perceived screening adherence, the study population did not have a family
risk is central to several health behaviour theories, including the history of breast cancer, were reviews, dissertations or qualitative
Health Belief Model (HBM),29 Protection Motivation Theory,30 and studies, had a non-observational design, were duplicate publica-
the Theory of Reasoned Action/Theory of Planned Behavior.31,32 tions of the same data, could not be located, intention to undergo
These theories, especially the HBM, have been used extensively in screening was assessed, only women with excessive BSE practices
attempts to explain the cognitive processes which influence were included, perceived risk of BRCA1/2 mutation was assessed,
women to participate in breast screening. Briefly, it is believed that scale of measurement of perceived risk was undefined, did not
a realistic perceived risk would motivate individuals to undertake present findings indicating direction of the association, included
health-protective behaviours appropriate to the level of risk, facil- women with a previous breast cancer diagnosis, or had limited
itating the process of early detection and treatment.33,34 generalizability.
There is a lack of consistency in the measurement of perceived Manual searches of bibliographic references of relevant articles
risk due to a lack of consensus regarding the most valid approach. identified by database search and two previously published meta-
While there is no existing gold standard, the most commonly used analyses were conducted, identifying 9 additional articles. One
scales include numeric probability scales, which ask respondents to article authored by the authors research team was also included.44
rate their risk on a 0e100% probability continuum of developing A total of 20 studies23,28,44e61 were included. Studies were classi-
breast cancer, verbal Likert-type scales, which ask for similar fied according to screening modality, categorized by finding and
responses using a verbal continuum from  extremely unlikely to ordered by publication year. Studies assessing adherence to
 extremely likely ,35e41 or other types of numeric scales (e.g.  1 mammography screening guidelines were further classified by
in x ).42 perceived risk measurement scale. Studies were also examined and
Results from two previous reviews indicate a small but signifi- described on the basis of quality using eleven criteria specific to
cant positive association between perceived risk and mammog- observational studies included in the checklist from the Downs and
raphy use (r ź 0.16 and g ź 0.19).22,43 These reviews have generally Black quality assessment tool.62 Ratings included  poor (satisfied 5
included studies of women with population-level risk of breast or fewer criteria),  fair (satisfied 6e8 criteria) or  good (satisfied 9
cancer and studies that examined the ever-use of screening. To our or more criteria).
knowledge, no previous review has examined this relationship in
women with familial breast cancer risk. This review is critical to Results
better understanding whether perceived risk influences guideline-
adherent breast screening use in women with familial breast cancer Perceived risk and adherence to mammography guidelines
risk. Accordingly, the objectives of this review were to: (i) identify
all observational studies that examined the association between Table 1 summarizes 5 studies which analysed the relationship
perceived breast cancer risk and adherence to breast screening between perceived risk of breast cancer measured on a numeric
(mammography, CBE, BSE) recommendations among women with scale and adherence to mammography guidelines. Perceived risk
familial breast cancer history; (ii) examine these studies in regard was measured uniformly across all studies, using an absolute scale
to methodological criteria, including measurement of the construct from 0 to 100. Zhang et al.44 and Schwartz et al.45 reported that
of perceived risk and other study design features, including higher ratings of perceived risk were associated with mammog-
recruitment of the study population, sample size, and the analyses raphy adherence, with effect sizes ranging from Odds Ratio
conducted. (OR) ź 1.21 to 2.41. Three other studies reported no association,
M.J. Walker et al. / The Breast 22 (2013) 395e404 397
Unique articles identified by
database search (n = 186)
Excluded following title/abstract screening (n = 148):
Did not examine relationship of interest (n = 69)
Did not conduct analyses separately for FH+ women (n = 37)
Review, dissertation or qualitative study (n = 28)
Non-observational design (n = 8)
Cancer occurring at site other than the breast (n = 6)
Studies flagged potentially relevant and
subjected to full-text review (n = 38)
Excluded (n = 28):
Assessed intention to screen/interest in screening (n = 7)
Non-observational design (n = 6)
Did not measure screening use according to guidelines (n = 2)
Assessed women with excessive BSE practices only (n = 2)
Assessed perceived risk of carrying BRCA mutation (n = 2)
No results presented (n = 1)
Perceived risk measurement scale not defined (n = 1)
Duplicate publication (n = 1)
Article could not be located (n = 1)
Did not conduct analyses separately for FH+ women (n = 1)
Included women with previous breast cancer diagnosis (n = 1)
Limited generalizability (n = 3)
Relevant articles identified by
manual search (n = 10)
Included in review (n = 20)
* FH+ = family history of breast cancer; BSE = breast self-examination
Fig. 1. Flow diagram of study selection process.
indicating ratings of perceived risk were approximately equal had a relatively large sample size (n ź 1019) and performed multi-
among adherent and non-adherent women.23,46,47 Zhang et al.44 variate analyses. Schwartz et al.,45 who reported a positive associ-
employed a population-based recruitment strategy, while the ation which approached statistical significance, similarly recruited
remaining studies used clinic-based recruitment. Zhang et al.44 also relatives of cases of breast cancer and performed multivariate
Table 1
Perceived risk of breast cancer (numeric scale) and adherence to mammography guidelines.
Author, year, country Sample (n) (family history) Designa Perceived risk Definition of screening Result
(PR) measure adherence
Significant positive association
Zhang et al., 2011, Canada44 Relatives aged 20e69 of BC cases CR Absolute lifetime 12 months Multivariate: women with
(n ź 1019) (1st-degree relative) risk e 0e100 PR 50% (OR ź 2.41, 1.29e4.49)
or >50% (OR ź 1.94, 1.08e3.49)
more likely to screen >12 months
(OR ź 2.09, 1.15e3.79),
and 12 months (OR ź 1.91,
1.15e3.16) vs. PR < 50%
Non-significant positive association
Schwartz et al., 1999, U.S.45 Relatives aged 40� of BC cases CR Absolute lifetime 12 months Multivariate: women with
(n ź 200) (1st-degree relative) risk e 0e100% higher level of PR more likely
to screen (OR ź 1.21,
0.97e1.50, p < 0.10) vs. lower PR
No association
Price et al., 2010, Aus./N.Z.23 Relatives of BC cases (n ź 748) CO Absolute lifetime 0e3 screens in 3 years Multivariate: PR approx. equal
(multiple BC case families) risk e 0e100 (based on age and among under-screeners
breast cancer risk) (OR ź 0.99, 0.98e1.00),
over-screeners (OR ź 1.00,
0.99e1.01) vs. adherent women
Bowen et al., 2003, U.S.46 Relatives aged 18e73 of BC cases CR Absolute 24 months Multivariate: PR approx. equal
(n ź 357) (1 blood relative) risk e 0e100 among women who screened
(OR ź 1.00, 0.99e1.20) vs. did
not screen
Lindberg & Wellisch, 2001, U.S.47 Patients aged 15e78 of a CR Absolute lifetime Guideline-compliant e 1 Bivariate: no correlation between
high-risk BC clinic risk e 0e100% ( generally ) to 3 ( rarely ) PR and screening compliance
(n ź 430) (self-reported (r ź 0.02, p > 0.01)
family history)
a
Design: CR ź cross-sectional; CO ź cohort; CC ź matched case-control.
398 M.J. Walker et al. / The Breast 22 (2013) 395e404
analyses, however used clinic-based recruitment and had a small et al.,49 both used similar comparative measures of perceived risk,
sample size (n ź 200), which may have resulted in inadequate and reported adjusted estimates (OR ź 1.82e2.90). Both studies had
power to detect a significant effect. Zhang et al.44 and Schwartz relatively large sample sizes and defined adherence as undergoing
et al.45 similarly defined adherence as undergoing mammography mammography within the previous 12 months. Lemon et al.49
within the past 12 months, while the studies reporting null findings employed a prospective design, while Zhang et al.44 used cross-
measured adherence over longer periods (2e3 years).23,46 sectional data. Finney-Rutten & Iannotti50 alternatively used an
Table 2 includes 12 studies which analysed the relationship absolute measure of perceived risk and reported an effect size of
between perceived breast cancer risk measured on a verbal scale a lower magnitude (OR ź 1.41; 95% CI: 1.05e1.89). Only Polednak
and mammography adherence. Findings were more consistent, et al.53 reported a negative association. This study used a random
with 6 studies reporting a positive association,44,48e52 four of which sampling recruitment approach and reported unadjusted results.
were statistically significant.44,48e50 Zhang et al.44 and Lemon Five studies demonstrated no association between perceived risk
Table 2
Perceived risk of breast cancer (verbal scale) and adherence to mammography guidelines.
Author, year, country Sample (n) (family history) Designa Perceived risk (PR) measure Definition of Result
screening adherence
Significant positive association
Zhang et al., 2011, Canada44 Relatives aged 20e69 of BC cases CR Comparative lifetime risk 12 months Multivariate: women
(n ź 1019) (1st-degree relative) (same-aged women) e 1 with PR  above / much
( much below avg. ) to 5 above more likely to
( much above avg. ) screen (OR ź 1.82,
1.17e2.81) vs. PR
 same / below / much
below
Somers et al., 2009, U.S.48 Relatives aged 22e69 recruited CO Absolute and comparative 40: annual, <40: speak Bivariate: perceived
through the community (n ź 187) risk (same-aged women); with health care risk significantly
(1st-degree relative) 4-item sum score professional correlated with
adherence (r ź 0.27,
p < 0.001)
Lemon et al., 2006, U.S.49 Relatives aged 18� of BC cases CO Comparative risk Within 1 year of Multivariate: among
(n ź 577) (1st-degree relative) (women without relative s diagnosis women 50e75, adherence
family history) e 1 higher among those
( much lower ) with  higher PR
to 5 ( much higher ) (OR ź 2.90, 1.29e6.50,
p ź 0.01) vs.  same/lower
PR. Adherence was
not higher among
women with PR  much
higher (OR ź 1.43,
0.60e3.43, p ź 0.42) vs.
 same/lower
Finney-Rutten & Iannotti, Women due for annual screen CR Absolute risk e 1 Within 2 months of Multivariate: women
2003, U.S.50 (n ź 300) ( 1 relative with BC) ( extremely unlikely ) to 7 reminder letter with higher PR more
( extremely likely ) likely to screen (OR ź 1.41,
1.05e1.89) vs. lower PR
Non-significant positive association
Isaacs et al., 2002, U.S.51 Genetic test patients aged 30� CR Comparative risk 12 months Bivariate: women with
(n ź 216) (10% probability of being (same-age women) e 1  higher PR more likely
BRCA1/2� or BRCA1/2� relative) ( much lower ) to 5 to screen (69%) vs. women
( much higher ) with  same/ less
PR (56%) (p > 0.10)
Schildkraut et al., 1995, U.S.52 Relatives aged 35� of BC cases CR Comparative risk 35e39: ever, 40e49: Multivariate: women
(n ź 967) (1st-degree relative) (women without relative past 1e2 years, with PR  greater
with BC) e 1 ( less ) 50�: past year (OR ź 1.26, 0.74e2.14,
to 4 ( much higher ) p ź 0.37) and  little
greater (OR ź 1.06,
0.65e1.73, p ź 0.81) more
likely to adhere vs.
women with PR  same .
PR  less less likely to
adhere (OR ź 0.64,
0.31e1.34, p ź 0.25)
Non-significant negative association
Polednak et al., 1991, U.S.53 Randomly sampled aged 50e75 CR Absolute lifetime risk e 0 12 months Bivariate: among
(n ź 141) (mother, grandmother, ( not at all ) to 4 ( very likely ) 50e64 year olds: more
aunt, sister or daughter with women (57.1%) with
a BC diagnosis) lower PR screened in
past year vs. higher
PR (42.9%) (p ź 0.17),
among 65e75 year olds:
women with lower PR
(26.7%) and higher
PR (30%) screened
approx. equally (p ź 0.90)
M.J. Walker et al. / The Breast 22 (2013) 395e404 399
Table 2 (continued )
Author, year, country Sample (n) (family history) Designa Perceived risk (PR) measure Definition of Result
screening adherence
No association
Martin & Degner, Patients aged 23� CO Absolute lifetime and general 50�: annual for past Bivariate: more women
2006, Canada54 from hereditary risk e 1 ( strongly agree ) to 5 3 years; <50: 1 in with  moderate PR
BC clinic (n ź 56) ( strongly disagree ); 3-items past 3 years reported screening
(BRCA1/2� relative) than women with
 high PR (p ź 0.356)
Diefenbach et al., 1999, U.S.55 Patients aged 18� CO Absolute lifetime risk e 1 12 months Multivariate: PR not
from family risk ( not at all likely ) associated with
program (n ź 213) to 3 ( very likely ) adherence (OR ź 0.99,
(1st-degree relative) p ź non-significant)
Drossaert et al., 1996, Women aged 50e69 invited for a CR Absolute and comparative risk Screen use Bivariate: no association
Netherlands56 mammogram (n ź 379) (other women) e 1 following invitation between PR and
(1st-degree relative) ( very small risk ) to 5 screening (correlation
( very high risk ); coefficients and probability
5-item sum score values not
presented, defined as
 very weak )
Audrain et al., 1995, U.S.57 Women identified CR Comparative lifetime risk 12 months, Multivariate: no association
by high risk BC (women without close relative 1e2 yrs, >2 yrs or never between PR and screening
consortium (n ź 395) with BC) e 1 ( lower ) to 4 (estimates not presented,
(1st degree relative) ( much higher ) p > 0.05)
Lerman et al., 1993, U.S.58 Relatives aged 35e79 of BC cases CR Absolute risk e 0 35e39: ever; 40e49: Bivariate: no association
(n ź 140) (1st-degree relative) ( no chance of developing BC ) past 2 years; between PR and screening
to 10 ( will get BC ); comparative 50�: past year (coefficients or probability
risk (relative to avg. woman) e 1 values not presented,
( much more ) to 5 defined as non-significant)
( much less ); 2 items
a
Design: CR ź cross-sectional; CO ź cohort; CC ź matched case-control.
and mammography adherence,54e58 generally defined as screening reported bivariate results only. The two cross-sectional studies,
within the past 12 months. Recruitment methods for these conducted by Isaacs et al.51 and Benedict et al.59 similarly recruited
studies were largely clinic-based, with the exception of Drossaert relatively small samples of women who had undergone genetic
et al.56 who recruited women through a population-based cancer testing or were daughters of cases of breast cancer, respectively.
screening program. With regard to design, two of the studies
reporting null findings used prospective cohort designs, while the
Perceived risk and adherence to BSE guidelines
remainder were cross-sectional. These studies also had small to
moderate sample sizes and only two reported multivariate results,
Table 4 summarizes 8 studies which examined the relationship
leaving more than half vulnerable to confounding.
between perceived risk and adherence to BSE guidelines. Similar to
the results observed with CBE, methodologies and findings were
Perceived risk and adherence to CBE guidelines mixed. Brain et al.60 and Zhang et al.44 indicated that women with
higher ratings of perceived risk practiced BSE more frequently than
Six studies examined the relationship between perceived risk women with lower ratings of perceived risk. Both studies had
and adherence to CBE guidelines, and are summarized in Table 3. A substantial sample sizes, were cross-sectional and presented results
majority reported null findings,23,51,54,59 with one study reporting that were adjusted for age, at minimum. Both studies also measured
a significant positive association28 and another reporting a non- perceived risk using both absolute and comparative measures,
significant positive association.44 Kash et al.28 examined CBE however Brain et al.60 used a verbal measure, while Zhang et al.,44
adherence in a small sample of women who were self-selected into examined perceived risk with both verbal and numeric measures.
a breast screening group, employing a verbal measure of perceived Two studies, conducted by Kash et al.28 and Lindberg & Wellisch,47
risk and defining adherence as undergoing CBE within the past 6 reported statistically significant negative relationships, wherein
months, but did not present adjusted results. Zhang et al.44 who also women with higher levels of perceived risk were less likely to
reported a non-significant positive relationship, conversely perform BSE. Both studies were cross-sectional and reported
employed a large population-based sample of female relatives of unadjusted results. Kash et al.28 measured perceived risk verbally
breast cancer cases, used a numeric measure of perceived risk, and had a relatively small sample (n ź 217) of women who were
defined adherence as undergoing CBE in the past 12 months and members of a breast screening program. Lindberg & Wellisch,47
adjusted for a number of potential confounders. In regard to the however, had a larger sample of patients of a high-risk breast
studies reporting no association, there was wide variation in study cancer clinic, who had all undergone genetic counselling, and
populations, approaches for measuring perceived risk, definitions of measured perceived risk on an absolute numeric scale. Four studies
guideline-adherence and analyses conducted. The two cohort reported no association between perceived risk and BSE perfor-
studies by Price et al.23 and Martin & Degner,54 measured screening mance,23,56,60,61 and demonstrated many methodological differ-
adherence over 3-year periods, but differed on all other features. ences. Price et al.23 collected data prospectively, had a relatively
Price et al.23 had a large sample size (n ź 748), measured perceived large sample size (n ź 748), measured perceived risk using an
risk numerically and presented adjusted results, indicating that absolute numeric scale and adjusted for a number of important
perceived risk was approximately equal among under-screeners socio-demographic and cognitive factors. Cohen61 and Benedict
and adherent women (OR ź 0.99). Martin & Degner,54 recruited et al.59 both recruited small samples of only daughters of breast
a small sample of women (n ź 56) from a hereditary breast cancer cancer cases and used a  1inx approach to measure perceived risk.
clinic, used an absolute verbal measurement of perceived risk and Cohen61 presented results adjusted for several cognitive factors, as
400 M.J. Walker et al. / The Breast 22 (2013) 395e404
Table 3
Perceived risk of breast cancer and adherence to clinical breast examination (CBE) guidelines.
Author, year, country Sample (n) Designa Perceived risk Definition of Result
(family history) (PR) measure screening
adherence
Significant positive association
Kash et al., 1992, U.S.28 Women from breast CR Question not provided e 6-months Bivariate: trend towards
protection program  low/no chance ,  moderately positive correlation between
(n ź 217) likely ,  very/extremely likely PR and adherence (d ź 0.41, t ź 0.06)
(1st-degree relative)
Non-significant positive association
Zhang et al., 2011, Relatives aged 20e69 CR Absolute lifetime 12 months Multivariate: women with
Canada44 of cases of invasive BC risk e 0e100 PR 50% or >50% more likely to
(n ź 1019) screen (OR ź 1.79, 0.82e3.92 and
(1st-degree relative) OR ź 1.15, 0.62e2.13) vs. PR < 50%
Comparative lifetime risk Multivariate: women with
(same-aged women) e 1 PR  above/much above average less
( much below avg. ) to 5 likely to screen (OR ź 0.80,
( much above avg. ) 0.45e1.14) vs. PR  average/below average
No association
Isaacs et al., 2002, Genetic test patients CR Comparative lifetime risk 12 months Multivariate: PR not significantly
U.S.51 aged 30� (n ź 216) (same-age women) e 1 associated with screening
(10% probability of ( much lower ) to (estimates not provided, p > 0.05)
being BRCA1/2� or 5 ( much higher )
BRCA1/2� relative)
Price et al., 2010, Female relatives of BC CO Absolute lifetime 0e6 screens Multivariate: under-screeners
Aus/NZ23 cases (n ź 748) risk e 0e100 within 3 years approx. equal to adherent women
(multiple BC families) (based on age and with regards to PR (OR ź 0.99,
BC risk) 0.98e1.00, p ź ns)
Martin & Degner, Patients aged 23� from CO Absolute lifetime and 3 screens within Bivariate: no significant difference
2006, Canada54 hereditary BC clinic general risk e 1 3 years between women reporting moderate
(n ź 56) ( strongly agree ) to PR to high PR with regard to
(BRCA1/2� relative) 5 ( strongly disagree ); screening (p ź 0.138)
3-items
Benedict et al., 1997, Daughters aged 18� CR Absolute risk (1 in x) e Frequency of Bivariate: no correlation between
U.S.59 of mothers aged 40�  1 in2 to  no chance screening PR and screening frequency
with BC (n ź 54) (r ź 0.0514, p ź 0.72)
(daughter of BC case)
a
Design: CR ź cross-sectional; CO ź cohort; CC ź matched case-control.
well as age and education, while Benedict59 reported bivariate demonstrated a small but significant positive association between
results. Drossaert et al.,56 had a moderate sample size (n ź 379) of higher levels of perceived risk and mammography use. However,
women invited for a mammogram by a screening program, used many studies examined ever-use of screening as opposed to
both an absolute and comparative verbal scale to measure perceived guideline-adherent screen use. Thus, women who reported single
risk and similarly presented unadjusted results. screening episodes were not distinguished from women who
engaged in screening that conformed to prescribed guidelines. This
Discussion is an important distinction as continual screening adherence is
necessary for appreciably reducing breast cancer mortality. Addi-
Perceived breast cancer risk appears to be only weakly posi- tionally, a majority of the women included in the previous reviews
tively associated with adherence to screening mammography had a population-level risk of breast cancer, rather than a family
guidelines. This relationship does not hold for adherence to history of breast cancer. Women whose relatives have been diag-
guidelines for CBE or BSE. While the association between perceived nosed with breast cancer may hold exaggerated risk perceptions or
risk measured on a numeric scale and mammography was not disproportionately experience cognitions such as cancer-related
consistently positive, when perceived risk was measured verbally, distress, anxiety, depression, worry and fear regarding breast
a more consistent positive association was found. With the cancer. Previous research has indicated that as many as half to
exception of one study,49 no evidence of a curvilinear relationship three-quarters of women with familial breast cancer history over-
was demonstrated. Lemon et al.,49 however, found that women estimate their personal risk of developing breast cancer.46,47,63,64
who reported their chances of getting breast cancer as  higher This may result in a negative impact on coping abilities and in
than women without a family history were more likely to adhere to turn, reduce the likelihood of screening. Research has also
mammography guidelines compared with women who reported demonstrated that women with higher levels of worry or anxiety
their chances as  the same/lower , but women who reported their are more likely vigilant or hypervigilant with regard to
chances as  much higher , were not more likely adherent. Only screening,55,60,61,65 however several studies have indicated that
a few studies calculated objective breast cancer risk,46e48,52,54 intrusive levels of cancer anxiety, worry or distress may deter
generally finding that women significantly overestimated their screening uptake in women with familial risk.28,45,47,58
risk.46,47,54 With regard to the methodological quality of the studies, 9
Findings of this review were similar to the conclusions drawn studies received a good quality rating,23,44e46,49,50,52,57,60 while the
from previously published meta-analyses examining perceived risk remaining 1128,47,48,51,53e56,58,59,61 were rated as fair. None of the
and breast screening use. Katapodi et al.43 also indicated the included studies had a poor quality rating. Over half of the studies
association between perceived risk and BSE use has been incon- had samples of 300 subjects or less, giving them limited power to
sistently reported. Both McCaul et al.22 and Katapodi et al.43 detect statistical significance given the observed effect sizes. Study
M.J. Walker et al. / The Breast 22 (2013) 395e404 401
Table 4
Perceived risk of breast cancer and adherence to breast self-examination (BSE) guidelines.
Author, year, country Sample (n) (family history) Designa Perceived risk (PR) measure Definition of screening Result
adherence
Significant positive association
Brain et al., 1999, U.K.60 Women identified by CR Absolute and comparative Infrequent: hospital surgeons risk (average woman) e 1e5; appropriate: monthly/ excessive BSE practices had
(n ź 833 (1st-degree 2 items bi-weekly; excessive: significantly higher PR vs.
relative) weekly/daily�) women with appropriate
or infrequent practices
(F ź 4.54, p 0.01).
No significant difference
in PR between appropriate
and infrequent examiners
Non-significant positive association
Zhang et al., 2011, Relatives aged 20e69 of CR Absolute lifetime once per yr, every Multivariate: women
Canada44 cases of invasive BC risk e 0e100 2e6 months, monthly with PR 50% less likely to
(n ź 1019) (1st-degree relative) screen every 2e6 months
(OR ź 0.68, 0.37e1.25) and
PR 50% more likely to
screen once/month
(OR ź 1.16, 0.66e2.05)
vs. PR < 50%
Comparative lifetime Multivariate: women with
risk (same-aged women) e 1 PR  above / much above
 much below average average more likely to
to 5  much above average screen every 2e6 months
(OR ź 1.13, 0.72e1.75)
and once/month
(OR ź 1.64, 1.02e2.63)
Significant negative association
Kash et al., 1992, U.S.28 Women from breast CR Question not monthly Bivariate: more women
protection program provided e  low/no with high PR never
(n ź 217 (1st-degree relative) chance ,  moderately likely , performed BSE vs. women
 very/extremely likely with moderate PR; women
with moderate PR more
frequently performed
monthly BSE vs. women
with high PR (p < 0.05)
Lindberg & Wellisch, Patients aged 15e78 of a CR Absolute lifetime Compliance (3 pt. scale Bivariate: high PR correlated
2001, U.S.47 high-risk BC clinic risk e 0e100% from  generally to  rarely ) with poorer compliance
(n ź 430) (self-reported (r ź 0.16, p ź 0.01)
family history)
No association
Price et al., 2010, Aus/NZ23 Female relatives of BC CO Absolute lifetime monthly Multivariate: over-screeners
cases (n ź 748) risk e 0e100 and adherent women were
(multiple-case families) approx. equal with regard
to PR (OR ź 1.00, 0.99e1.01)
Cohen, 2002, Israel61 Cases: daughters of BC CC Absolute lifetime risk Frequency of screening Multivariate: no association
cases; controls: daughters (1 in x) where x ź 0e100 between PR and screening
whose mothers never had (coefficients and probability
BC (n ź 127) values not presented,
(daughter of BC case) defined as ns at p < 0.05)
Benedict et al., 1997, U.S.59 Daughters aged 18� of CR Absolute risk (1 in x) e  1 Screening frequency Bivariate: no correlation
mothers aged 40� with in 2 to  no chance between PR and screening
BC (n ź 54) (daughter frequency (r ź 0.1319,
of BC case) p ź 0.361)
Drossaert et al., 1996, Women 50e69 invited CR Absolute and comparative monthly Bivariate: correlation
Netherlands56 for a mammogram risk (other women) e 1 coefficients and probability
(n ź 379) (1st-degree relative) ( very small risk ) to 5 values not presented
( very high risk ); (defined as  very weak )
5-item sum score
a
Design: CR ź cross-sectional; CO ź cohort; CC ź matched case-control.
populations varied, with few studies employing population-based and several studies included in this review suggest that age may
recruitment strategies.44,56 Many samples consisted of women modify the relationship between perceived risk and adherence to
identified from high-risk clinical settings, limiting generalizability screening guidelines.49,53
to women in the broader population with a familial history of breast It is also critical to note the heterogeneity in measurement of
cancer. Many women recruited from clinical settings were reported perceived risk. Risk perception is a subjective construct, leading to
to have undergone genetic testing, have strong familial histories of difficulties in its conceptualization, measurement and translation.
breast cancer and markedly high rates of adherence to screening There are substantial differences in the types of measurement
mammography guidelines (80e95%).47,51,54,55Study populations scales employed, including Likert-type verbal scales or numeric
also varied by age. Previous research has suggested that rates of scales, and the measurement of absolute vs. relative or comparative
screening among women with familial risk may differ by age25,66 risk. Differences have been demonstrated in the estimates of
402 M.J. Walker et al. / The Breast 22 (2013) 395e404
perceived risk produced by different types of scales. Numeric scales among women with familial breast cancer risk, with the causal
appear more likely to result in an overestimation of risk, while direction of the observed association not yet established. Previous
verbal scales are more likely to produce the opposite effect, work suggests that the weak association between perceived risk
particularly when women are asked about their comparative and breast screening is predictable,34 as the decision to undergo
risk.43,67 One previous study demonstrated poor correlations breast screening is dependent on the complex interaction of
between the numeric and verbal scales used to measure perceived a number of cognitive and environmental factors.22,43 The lack of
cancer risk.68 a clear effect limits the ability to make recommendations regarding
Several studies have demonstrated evidence that even highly- strategies to facilitate increased adherence to breast screening
educated people have difficulty interpreting basic numeric proba- guidelines among women with familial risk. Heterogeneity in
bility statistics.69e71 Numeracy (one s aptitude for basic mathe- design, measurement and screening guidelines likely account for
matical concepts) has been linked with consistency in using much of the inconsistency observed. The most optimal method of
perceived risk measurement scales72 as well as accuracy of risk accurately measuring perceived risk has yet to be determined and
estimates.70,73,74 While numeric measurement of perceived risk the lack of consistency in practice makes cross-study comparisons
offers improved levels of precision and interpretability to scientists difficult. Future studies with prospective methodologies that use
compared to verbal scales, research suggests that respondents consistent measurement, are adequately powered and account for
favour verbal scales. For example, Diefenbach et al.75 found that potential confounding, mediating and effect-modifying factors are
college students reported perceived risk scales with verbal anchors warranted.
easier to use and more representative than numeric scales. Appropriate use of mammography and other breast screening
Woloshin et al.76 similarly found that the verbal scale demonstrated modalities is critical for early detection and diagnosis of women at
the highest usability and satisfaction scores, as well as test-retest increased risk of breast cancer and may impact overall prognosis.
reliability for assessing perceived breast cancer risk, while Further investigation of how high-risk women perceive their risk,
numeric scales (linear odds and  1inx ) were reported to be harder the proximity of perceived risk to objective risk and how perceived
to use, had lower satisfaction scores, more missing responses and risk may influence breast screening practices is needed. This will
poorer test-retest reliability. allow researchers and practitioners to understand where appro-
Scale performance can also be affected by factors including the priate risk education and management efforts should be focused.
ordering of items or perceived risk held by the respondent. Levy
et al.35 analysed the psychometric properties of the numeric, verbal
Ethical approval
and comparative measures of perceived breast cancer risk, finding
good convergent validity (r > 0.60). Scale performance however
Ethical approval not required (review paper).
relied on the level of perceived risk actually held. This study35
demonstrated that for identifying women with very high risk
Conflict of interest statement
perceptions, the numeric and comparative measures had the
highest sensitivity and specificity. For women with very low risk
The authors declare that there are no conflicts of interest.
perception, the numeric measure demonstrated the lowest sensi-
tivity while the comparative measure demonstrated the highest
Acknowledgement
sensitivity and lowest specificity. Another study77 indicated that
perceptions of ovarian and colorectal cancer risk were lower when
This research was supported by the Canadian Breast Cancer
a question measuring comparative risk preceded an item
Foundation e Ontario Region. There was no involvement of the
measuring absolute risk. Differences in the types of measurement
study sponsor in the study design, collection, analysis and inter-
of perceived risk may explain the inconsistent findings.
pretation of data; the writing of the manuscript; or the decision to
Lastly, it is critical to highlight the lack of prospective studies.
submit the manuscript for publication.
Only a few studies employed prospective designs.23,48,49,55 The
simultaneous measurement of perceived risk and adherence to
Appendix A. Supplementary data
breast screening guidelines precludes insight into causality of the
observed associations. It is possible that participation in breast
Supplementary data related to this article can be found at http://
cancer screening (or lack thereof), or the findings of previous
dx.doi.org/10.1016/j.breast.2012.12.005.
screens may influence perceived breast cancer risk, making reverse
causation a concern. This is a significant limitation and the need for
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