Anxiety and Compliance Among Women at High Risk for Breast Cancer
Lindberg
Nangel M. Lindberg, Ph.D. and David Wellisch, Ph.D.
UCLA School of Medicine
ABSTRACT
The aim of this study was to investigate the association be-
tween symptoms of depression and general anxiety, patient’s
feelings of vulnerability to cancer, the anxiety experienced spe-
cifically in relation to various cancer-screening procedures, and
compliance with these procedures among women at familial risk
for breast cancer. The data were obtained from 430 patients
from the High Risk Clinic at the UCLA Revlon Breast Center
who completed the State-Trait Anxiety Inventory and answered
questions about their perceived vulnerability to breast cancer;
the anxiety they experienced regarding undergoing pap smear
tests, mammograms, and breast self-examinations (BSEs); and
their compliance with these cancer-screening procedures. Cor-
relations were used to estimate the association between feelings
of anxiety and compliance. We found that women attending pro-
grams targeting those at familial risk for breast cancer suffer
from significant symptoms of general anxiety. General anxiety
was found to be related to anxiety regarding specific screening
practices but not to women’s perceived vulnerability to cancer.
In general, neither general nor screening-specific anxiety were
found to be related to patients’compliance with screening prac-
tices; however, significant associations were found between pa-
tient’s feelings of anxiety regarding BSEs and their actual per-
forming them. BSE appears to be the only procedure for which
compliance is negatively associated with procedure-specific
anxiety. We offer possible explanations for this relation and dis-
cuss the possible psychological impact that recommendations
regarding BSEs may have on highly anxious at-risk women.
(Ann Behav Med 2001, 23(4):298–303)
INTRODUCTION
Having a family history of breast cancer is a significant risk
factor for developing the disease in one’s lifetime (1,2). Among
women at familial risk for breast cancer, early detection practices
can play a significant role in reducing mortality. Recommended
methods for early detection include yearly mammographic
screenings and monthly breast self-examination (BSE) (3).
Women at familial risk for breast cancer perceive them-
selves to be at heightened vulnerability to the disease, frequently
overestimating their likelihood of developing breast cancer
This research was supported by funds from the California Breast Can-
cer Research Program of the University of California, Grant
4BF–0002, to Nangel Lindberg.
Reprint Address: N. M. Lindberg, Ph.D., Department of Psychiatry,
UCLA School of Medicine, 760 Westwood Plaza, Los Angeles,
CA 90024–1759. E-mail: nlindberg@mediaone.net
© 2001 by The Society of Behavioral Medicine.
298
Anxiety
andand
Compliance
Wellisch
(4–6). Women at risk for breast cancer also tend to exhibit high
levels of general distress, anxiety, depression, and intrusive
thoughts about breast cancer (7–11). The literature suggests that
the anticipation of medical procedures or tests, and the expecta-
tion of illness, is associated with greater general anxiety (12);
thus, women at risk for breast cancer may be at heightened risk
for general anxiety as well as for experiencing anxiety in rela-
tion to specific cancer-screening procedures. The impact that
anxiety specific to cancer-screening procedures may have on
women’s health behaviors may be explored using the frame-
work of the Fear Arousing Communications Theory (13), which
suggests that an elevated level of anxiety may be positively asso-
ciated with health care behaviors, whereas too little or too much
anxiety may result in denial or avoidance behaviors and thus be
negatively associated with compliance with screening practices.
Although some studies have suggested that among some
women at risk for breast cancer, cancer-related anxiety may in
fact lead to adequate or even excessive compliance with screen-
ing recommendations (14–16), there is concern regarding the
fact that, regardless of their anxiety levels, a substantial propor-
tion of women at risk for breast cancer do not follow medical
recommendations regarding mammography or BSE screening
practices (10,11,17,18). In particular, some studies have sug-
gested an inverse association between distress and breast cancer
screening practices, where the heightened anxiety experienced
by women at risk for breast cancer becomes a barrier to mam-
mography screening (10), obtaining clinical breast examina-
tions, or performing monthly BSE (11). Rather than finding a
curvilinear relation between anxiety and compliance, where an
optimal level of anxiety may foster screening practices, several
studies have found a negative linear relation between anxiety
and obtaining mammograms or performing BSE (10,11). Re-
searchers hypothesize that nonperformance of recommended
screening practices by patients may constitute an avoidance
technique to reduce their experienced anxiety (11). To date, it
remains unclear whether psychological symptoms hinder or fos-
ter compliance with different recommended screening practices
with a high-risk population.
Our clinical experience and the literature indicate that the
role of the health care professional may be critical in determin-
ing the degree to which women adhere to recommendations re-
garding self-care (19). Specifically, it is our belief that compli-
ance with cancer-screening procedures will be strongly
associated with the degree to which such screenings take place
in a supportive and emotionally holding environment. As such,
it is our experience that women may be more likely to adhere to
screenings procedures that are performed by, or in the presence
of, a trusted individual rather than those that are to be performed
by the woman when alone, where her anxiety may not be as-
suaged by the supportive presence of another.
Volume 23, Number 4, 2001
In summary, little information exists in the literature con-
cerning the relation between general anxiety and the anxiety ex-
perienced specifically in regard to cancer-screening practices. In
addition, little information is available concerning the relation
between anxiety (general or specific to cancer-screening tests)
and compliance with these screening procedures.
To examine these relations, we hypothesize the following:
1. Because evidence suggests that general anxiety may in-
crease in (a) the anticipation of medical procedures or tests and
(b) the expectation of illness, we expect that higher levels of
general anxiety will be significantly associated with anxiety re-
lated to specific cancer-screening practices and that high levels
of general anxiety will be associated with high levels of per-
ceived vulnerability to breast cancer.
2. Based on the Fear Arousing Communications Theory,
we hypothesize that high levels of general anxiety will be asso-
ciated with better compliance with cancer-screening proce-
dures, with anxious patients turning to these screening proce-
dures as a way of reducing their anxiety.
3. High levels of anxiety related specifically to can-
cer-screening practices will result in poorer compliance with
these screening tests. We expect this relation to apply to BSE,
with women with high levels of anxiety regarding BSE being less
compliant with this procedure; however, we do not expect this re-
lation to exist between anxiety related to mammographies and
pap smears and women’s compliance with these screening prac-
tices. In the latter two cases we predict significant positive associ-
ations between screening-specific anxiety and compliance.
METHOD
Overview of Procedures
The data presented here are part of a larger research project
conducted from the UCLA Revlon Breast Center High Risk
Clinic, which is a multidisciplinary setting that serves patients at
familial risk for breast cancer. Women are referred to the clinic
by word of mouth or by community and University of Califor-
nia, Los Angeles (UCLA) physicians. Services for the clinic are
covered by some health insurances, and the remainder of the pa-
tients pay out of pocket.
During their initial visit to the clinic, patients are individu-
ally seen and counseled by an oncologist, a genetics counselor, a
nurse practitioner, a nutritionist, and a psychologist. Following
their initial visit, many patients receive a mammogram. During
follow-up visits, patients are seen by specific members of the
team according to the patient’s needs, and at the end of their vis-
its they may receive follow-up mammograms, if needed.
A detailed description of the structure and services provided
by the clinic has been provided elsewhere (20). Both in the initial
consultation and subsequent follow-up visits, the clinic nurse
practitioner plays a critical role. She not only educates patients as
to the nature and importance of several cancer-screening proce-
dures, she also provides them specific and individual guidelines
to follow regarding frequency of each type of examination; for
example, whereas a yearly mammogram may be recommended
Anxiety and Compliance 299
for some patients, based on their risk factors other patients may
receive a recommendation for more frequent mammograms. In
addition, the clinic nurse practitioner provides in-depth teaching
of BSE techniques, first using a model, then helping the patient
perform the exam on herself, providing necessary feedback and
supervision and answering the patient’s questions until the patient
feels fully competent in performing BSE.
During their initial consultation with the team psychologist,
women complete baseline questionnaires assessing depression
and anxiety and provide psychosocial background information,
including their thoughts and feelings regarding health behaviors
and their actual health practices.
Participants
Data are presented for 430 consecutive patients from the
High Risk Clinic who, after receiving a complete description of
the study, provided written consent for participation. Partici-
pants were between the ages of 15 and 78 (M = 42.62 years).
The majority of participants were White (84.4%), were married
(60.6%), and had a college or advanced degree (72.6%).
For participants, the average number of relatives afflicted with
breast cancer was two, with a range of 0 to 26. Over 28% of partici-
pants reported having three or more relatives with breast cancer.
Assessment Procedures
The information presented here was obtained during the pa-
tients’ initial consultation with the team psychologist. Following
consent, participants completed baseline questionnaires assess-
ing depression and anxiety symptoms and a semistructured clin-
ical interview in which psychosocial background information
was obtained, including participants’ feelings about, and com-
pliance with, different health practices. After the interview, the
psychologist remained available to answer participants’ ques-
tions regarding the study or to address specific issues brought up
during the interview.
Measures
The data reported in this study are based on participants for
whom complete information was available and include the in-
struments that follow.
State–Trait Anxiety Inventory. The State–Trait Anxiety In-
ventory (STAI) (21) is a 40-question instrument that measures
current level of anxiety (state anxiety; STAI–S) and a
characterological or enduring level of anxiety (trait anxiety;
STAI–T). Responses are on a 4-point Likert scale from 1 (al-
most never) to 2 (sometimes) to 3 (often) to 4 (almost always).
This test has excellent concurrent validity (levels up to r = .80)
and reliability (r = .77) (22). The STAI manual reports high in-
ternal consistency for both the Trait scale and the State scale,
which was replicated in this study with internal consistency
scores of .89 (state anxiety) and .91 (trait anxiety).
Perceived risk of breast cancer. To assess personal risk for
developing breast cancer, participants were asked to provide an
estimate of their likelihood of developing breast cancer in their
300 Lindberg and Wellisch Annals of Behavioral Medicine

lifetime, on a scale of 0% to 100%, with higher scores indicating Screening-Related Anxiety and Compliance
higher perceived risk of developing breast cancer. Participants’ mean scores on their self-reported level of anxi-
ety and compliance regarding different screening procedures are
Anxiety regarding screening practices. Participants were presented in Table 2. As shown, the mean score for anxiety re-
asked to rate the level of anxiety they experienced about under- lated to obtaining a pap smear was 1.41 (SD = 0.63); for obtaining
going pap smear tests, obtaining regular mammography tests, regular mammography tests, the mean anxiety score was 2.06
and performing regular BSEs. Each screening practice was as- (SD = 1.09); and for performing regular BSE, the mean anxiety
sessed by a separate question, assessed on a 4-point scale rang- score was 2.20 (SD = 1.18). Analyses were conducted using
ing from 1 (minimal) to 4 (maximum). paired t tests, comparing the anxiety reported by participants in
relation with each screening test. The results showed that the anx-
Compliance regarding screening practices. Participants iety associated with pap smears was significantly lower than that
were asked to state their level of compliance with recommenda- associated with mammograms (t = 11.57, p < .0001) and BSEs (t
tions regarding performing BSE and obtaining pap smears and = 9.97, p < .0001). No significant differences in anxiety were
mammograms. For each, compliance was assessed on a 3-point found between mammograms and BSEs (t = 1.56). Thus, pap
scale ranging from 1 (generally compliant) to 3 (rarely compliant). smears appear associated with the least anxiety, whereas BSEs
appear to be associated with the highest level of anxiety.
RESULTS In terms of compliance, the mean score for pap smears was
1.23 (SD = 0.63); for mammograms, mean compliance rating
General Anxiety was 1.55 (SD = 1.12); and for BSEs, the mean was 1.94 (SD =
Analyses of the assessed symptoms of anxiety suggest that 0.83). Paired t tests were conducted to compare the compliance
women at risk for breast cancer tend to have elevated scores on associated with each screening procedure; results showed that
both STAI subscales. The mean score for the STAI–S was 37.89 compliance for pap smears was significantly higher than for
(SD = 12.05) and for the STAI–T was 37.73 (SD = 10.79). Both
mean scores are close to the clinical cutoff point of the 40th per- TABLE 1
centile, indicating significant symptoms of anxiety. Among par- Frequency Distribution of Participants’ Estimated Lifetime Risk
ticipants, 40% scored above the clinical cutoff point for STAI–S, for Developing Breast Cancer
and 45.1% scored above the clinical cutoff point for STAI–T, in-
dicating significant symptoms of anxiety. Estimation % N
Underestimated by between 10 and 30% 4.9 13
Risk Perception Accurately estimated within 10% 18.4 49
For each participant, calculations of actual risk were made Overestimated by between 10 and 19% 12.8 34
using the Gail Model, which assesses risk of breast cancer using Overestimated by between 20 and 29% 9.4 25
Overestimated by between 30 and 39% 20.7 55
information regarding the participant’s age, number of affected
Overestimated by between 40 and 49% 7.9 21
first-degree relatives, age at menarche, number of biopsies, and Overestimated by between 50 and 59% 9.0 24
number of abnormal biopsy findings. Analyses performed on pa- Overestimated by between 60 and 69% 9.0 24
tients for whom complete information was available revealed sig- Overestimated by over 70% 7.9 21
nificant differences between participants’ perceived risk for
Note. Data were based on 266 participants for whom complete
breast cancer (M = 49.77, SD = 25.35, n = 266) and their com- information was available.
puted actual risk (M = 18.11, SD = 7.58), t(265) = 9.81, p < .0001.
Comparisons between participants’ perceived lifetime risk
and actual risk calculations indicated that 18.4% of cases accu- TABLE 2
rately estimated their likelihood of developing breast cancer, Anxiety and Compliance Regarding Screening Practices
within 10 percentage points, whereas 4.9% underestimated their
likelihood of developing the illness by 10% to 40%, and 76.7% Screening Practice
overestimated their perceived risk by over 10%. Table 1 shows a Obtaining
frequency distribution of participants for whom complete infor- a Pap Obtaining a Performing
mation was available in terms of their estimation of their per- Smear Mammogram BSEs
ceived lifetime risk for developing breast cancer. Independent t
Mean anxiety score 1.41 2.06 2.20
tests were conducted comparing participants who underesti- n 341 331 317
mated their lifetime risk for developing breast cancer (n = 13) SD 0.79 1.09 1.18
with those who overestimated their risk (n = 204). Analyses re- Mean compliance score 1.23 1.55 1.94
vealed some significant differences, with overestimators report- n 314 311 314
ing significantly higher scores on the STAI–T (M = 38.29 vs. M SD 0.63 1.12 0.83
= 32.91, t = 3.12, p < .005) and poorer compliance on mammo- Note. Anxiety scores range from 1 (minimal) to 4 (maximum).
grams (M = 1.5 vs. M = 1.1, t = 3.48, p < .005) and BSEs (M = Compliance scores range from 1 (generally compliant) to 3 (rarely
2.15 vs. M = 1.42, t = 3.39, p < .005). compliant). BSE = breast self-exam.
Volume 23, Number 4, 2001 Anxiety and Compliance 301

mammograms (t = 5.34, p < .0001) and BSEs (t = 13.13, p < mograms (R = .23) and performing BSEs (R = .23), p < .005. In
.0001) and that compliance for mammograms was significantly contrast, no significant associations were found between com-
higher than for BSEs (t = 5.50, p < .0001). Thus, compliance ap- pliance with any of the recommended screening practices and
pears to be highest for pap smears, followed by mammograms, the STAI–State or STAI–T anxiety measures.
and least for BSEs. In terms of the association between the experience of anxi-
As shown in Table 3, among our sample, compliance with ety regarding screening practices and the actual compliance
pap smears and mammograms tended to be high, with 88.7% with these practices, the analyses showed no significant rela-
and 79.3% of participants reporting high compliance with tions. The only exception to this pattern was the significant as-
those tests. Poor compliance was reported by only 1.9% of sociation between anxiety regarding BSE and the actual com-
participants for pap smears and 5.6% for mammograms. By pliance with this practice (R = .21), with higher anxiety
contrast, compliance with BSE tended to be lower, with associated with poorer compliance.
34.3% of participants reporting high compliance, 38% report- In addition, examination of risk perception scores revealed
ing compliance only “sometimes,” and 27.7% reporting little no significant association between participants’ personal risk
or no compliance. estimates and their level of state (R = .12) or trait anxiety (R =
.12). However, participants’ risk perception ratings were found
Association between general and screening-specific anxiety to be significantly associated with the anxiety experienced in re-
and compliance. Table 4 presents a table of correlations between gard to BSE (R = .15) and with compliance with BSE (R = .16),
general anxiety (STAI–S and STAI–T), personal risk perception, with higher risk perceptions being associated with more anxiety
and screening-specific measures of anxiety and compliance for about performing BSE and with poorer compliance. No signifi-
participants for whom complete data was available (n = 239). As cant associations were found between risk perception and pap
shown, STAI–S anxiety scores are significantly related to the smear or mammogram compliance, or between risk perception
anxiety experienced by participants in regard to obtaining pap and screening-specific anxiety.
smears (R =.19), mammograms (R = .25), and performing BSEs
(R = .29), p < .005. STAI–T anxiety scores are significantly asso-
ciated to the anxiety experienced in relation to obtaining mam- DISCUSSION
For women at familial risk for developing cancer, adher-
TABLE 3
ence to recommendations regarding BSE, mammographic
screening, and pap smears is obviously of special importance.
Compliance With Screening Practices
Although most major health organizations recommend mam-
Reported Compliance mography screening, annual pap smears and clinical breast ex-
ams, and monthly BSE, adherence to such cancer screening rec-
Generally Sometimes Rarely
ommendations has been shown to be suboptimal among women
Screening Practice % n % n % n at risk for breast cancer (10,11,17,18). For many women at risk,
the suboptimal adherence to screening recommendations may
Pap smears 88.7 189 9.4 20 1.9 4
be driven by psychological distress, particularly feelings of per-
Mammograms 79.3 169 15.0 32 5.6 12
Breast self-exams 34.3 73 38.0 81 27.7 59
sonal vulnerability to cancer, general feelings of anxiety, and
anxiety related specifically to the screening practices. Under-
Note. Data are presented as percentage of participants responding. standing how best to foster these health practices among women
at risk is a major objective of the larger longitudinal project of
TABLE 4 which this study is a part.
Correlations Between General and Screening-Specific Anxiety The data presented in this study confirm previous findings
and Compliance that women attending programs targeting those at risk for breast
cancer are likely to suffer from significant symptoms of depres-
SA TA PA MA SBA PC MC SBC sion and anxiety and to vastly overestimate their risk for devel-
TA .74* oping the disease. It is more noteworthy that women’s general
PA .19* .08 anxiety, whether current or enduring, appears to be largely unre-
MA .25* .23* .27 lated to their overestimation of their risk. This finding is in line
SBA .29* .23* .22 .42 with previous findings suggesting that breast cancer anxiety and
PC .17 .02 .04 .18 .08 perceived risk of breast cancer appear to be separate constructs
MC .11 .09 .07 .11 .09 .13 (6) and that overestimation of risk is not a function of women’s
SBC .11 .12 .04 .03 .21* .20* .02
immediate worries or general anxious states. Rather, we believe
RP .12 .12 .08 .11 .15* .02 .02 .16*
that overestimation of risk appears clinically to be a function of
Note. Data are based on n = 239. SA = state anxiety; TA = trait anxiety; an ongoing internalized self-perception of vulnerability specific
PA = pap smear anxiety; MA = mammogram anxiety; SBA = self-breast to breast cancer.
examination anxiety; PC = pap smear compliance; MC = mammogram
compliance; SBC= self-breast examination compliance; RP= risk
This self-perception, we hypothesize, is developmental in
perception. nature and is related to identification, introjection, and internal-
*p = .01. ization of the ill family member, especially the mother. As such,
302 Lindberg and Wellisch
it transcends clinical anxiety and becomes a more fixed feature
of the woman’s internal “self” structure. As such, it is remark-
ably resistant to change or modification in clinical interventions.
In regard to the study’s hypotheses, we found the following:
High general anxiety was found to be significantly associated
with a measure of anxiety specific to screening procedures. The
data suggest that women who are highly anxious in general are
likely to experience high levels of anxiety in regard to specific
medical recommendations related to cancer screening tests. Cli-
nicians might find this information useful, as such women may
not be particularly forthcoming regarding their feelings about
these particular procedures.
In line with previous findings (6), our study found that feel-
ings of general anxiety were not to be associated with women’s
perceptions of vulnerability to breast cancer. It is our own view
that rather than being related to anxiety, risk perception has be-
come a more fixed and enduring feature of the women’s internal
psychological sense of self. These women appear to carry within
themselves a feeling of vulnerability that seems to transcend and
be unrelated to other perceived threats or feelings emerging
from the external world.
Contrary to what we expected, general anxiety was not
found to be associated with compliance with any of the assessed
screening procedures. Variations in compliance appear to be un-
related to general anxiety, a finding in direct contrast to previous
findings that high scores on a general anxiety measure were re-
lated to, and predictive of, poor BSE compliance (23).
As predicted, anxiety regarding particular screening proce-
dures was unrelated to patients’ reported compliance with these
screening tests, with the noteworthy exception of BSE. We
found that BSE emerged as the only screening procedure associ-
ated with screening-specific anxiety. In this sample, increased
anxiety about BSE was associated with poorer compliance; this
is in direct contrast to previous studies that found an inverse as-
sociation between distress and mammography screening prac-
tices (10). This may be explained by our use of a more specific
source of anxiety (i.e., anxiety related to a specific screening
procedure) as compared to a more general measure of psycho-
logical discomfort (i.e., psychological distress) that perhaps
more closely resembles general anxiety. It is also significant to
note that, in this sample, anxiety related to performing BSE was
also significantly related to women’s perceived vulnerability to
breast cancer. Thus, women that perceive themselves to be at
high risk for breast cancer are more anxious about performing
BSE and are less likely to do so.
This study points out an important distinction between gen-
eral anxiety and screening-specific anxiety, and the likelihood to
comply with screening procedures. General anxiety was totally
unrelated to compliance with screening procedures, and screen-
ing-specific anxiety was related only to compliance with BSE.
As stated previously, in this study, compliance and general anxi-
ety were not found to be related. In this sample, compliance with
screening procedures does not appear to be a way in which
women manage general anxiety. One possible explanation for
this finding is that given the high educational level and the
self-identification as “at risk,” the patients in our sample are
Annals of Behavioral Medicine
highly informed and invested in performing screening practices.
Thus, they comply with them by rote, independently of their
general anxiety states or the anxiety they experience regarding
the specific screening procedures. The one and only exception
to this is BSE.
This particular screening test is different because the women
are alone in performing this procedure, unlike pap smears or
mammographies where the participation of another individual
buffers the impact. Time and again we have heard these patients
say to us in the clinic, “I do not perform breast self-examinations
because I would not know what I am feeling.” This is in spite of
extensive, repeated, and specific training on BSE by our clinic
nurse practitioner. We conclude that the possibility of potentially
finding disturbing information while alone sets off anxiety that
makes this procedure too threatening. This is particularly true for
those women who see themselves as more vulnerable to breast
cancer. Having someone intervene between them and the poten-
tially disturbing information (e.g., a questionable spot on a
mammogram or a finding of abnormal cervical cells) forms a
boundary that makes compliance with these other procedures
possible, regardless of the anxiety associated with them. Thus, in
clinical settings, this datum suggests it is unrealistic and poten-
tially traumatic to direct women with very high self-appraised
risk for breast cancer to perform BSE at home.
It is important to note that, overall, participants in this study
reported high levels of compliance with pap smears and mam-
mograms and that noncompliance appeared to be a problem
only with respect to BSE. This underscores the importance of
the role the nurse practitioner may play in working on compli-
ance for this screening procedure, and it suggests that care
should be taken to provide education and support to patients,
taking time to teach BSE techniques with the use of a model
prior to having patients apply the techniques on their own
breasts and having several practice trials in the clinic prior to in-
structing patients to perform BSE at home. In addition, in the
context of the education provided to patients by the clinic nurse
practitioner, it might be useful to instruct patients to practice at
home and to report back their experiences about BSE to the
nurse practitioner, who would provide them with further feed-
back, necessary information, and reassurance.
It is important to examine the generalizability of these data.
First, it is important to keep in mind that these data are derived
from a private hospital High Risk Clinic. As a group, they are
predominantly White, middle class, and well educated. Further-
more, patients seen at the clinic clearly identify themselves as at
risk and are thus motivated or concerned enough to seek help
and guidance at the clinic. This factor alone might explain the
high levels of anxiety found among our participants. In addition,
it is important to note that compliance was assessed only
through the use of self-reports rather than clinical data, which
makes it impossible to assess its reliability.
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