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PSYCHO-ONCOLOGY

Psycho-Oncology 14: 939948 (2005)


Published online 2 March 2005 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.903

THE PSYCHOLOGICAL IMPACT OF


MAMMOGRAPHIC SCREENING ON WOMEN
WITH A FAMILY HISTORY OF BREAST
CANCER}A SYSTEMATIC REVIEW
EILA K. WATSONa,*, BETHAN J. HENDERSONb, JOANNE BRETTa, CLARE BANKHEADa and JOAN AUSTOKERa
a
Department of Primary Care, Cancer Research UK Primary Care Education Research Group, University of Oxford,
Old Road Campus, Headington, Oxford OX3 7LF, UK
b
Institute of Medical & Social Care Research, Wheldon Building, University of Wales, Bangor,
Gwynedd LL57 2UW, UK

SUMMARY

This systematic review aims to assess the psychological impact of mammographic screening on women with a family
history of breast cancer. Women with a family history, and hence increased risk, of breast cancer are known to
experience higher levels of anxiety about cancer. They are also often oered screening from an earlier age. The
psychological consequences of screening are therefore of particular importance for this group of women. A
comprehensive search of 4 electronic databases was conducted from 1982 to 2003, combining sets of terms relating to
(1) breast screening or mammography (breast screen; mammogra), (2) psychological impact (adverse eects;
anxi; distress; nervous; psych, psychological consequences; stress; worry) and (3) family history. Reference lists
from relevant papers were examined for additional papers. The review identied seven papers from four countries.
Overall, the ndings indicate that, similar to women in the general population, most women with a family history do
not appear to experience high levels of anxiety associated with mammographic screening. Although women who are
recalled for further tests do experience increased anxiety the levels appear to be no greater than for women without a
family history. We conclude that further research on this topic is required}this should include studies designed
specically to consider both the negative and positive impact of mammographic screening on women with a family
history, using validated measures of anxiety and worry in combination with qualitative research. Copyright # 2005
John Wiley & Sons, Ltd.
KEY WORDS: breast screening; mammography; family history; anxiety; psychological impact

INTRODUCTION certain family history criteria should be oered


regular mammographic surveillance from the age
of 40 (National Institute for Clinical Excellence,
Women with a family history of breast cancer
2004), although there is as yet no strong evidence
(FHBC) have an increased risk of developing the
of eectiveness for this approach (Routine screen-
disease (Pharaoh et al., 1997). The risk increases
according to the number of close relatives aected ing in the UK begins at age 50.)
It has been shown that women with a FHBC
with breast cancer and the age at which they are
have high levels of cancer-specic anxiety (Lloyd
diagnosed (Eccles et al., 2000). Current recom-
mendations in the UK are that women fullling et al., 1996; Zakowski et al., 1997). In a popula-
tion-based study of rst-degree relatives of breast
cancer patients (Lerman et al., 1993), 53% of
respondents experienced intrusive thoughts about
*Correspondence to: Department of Primary Care, Cancer
Research UK Primary Care Education Research Group, breast cancer, with 30% of the sample indicating
University of Oxford, Old Road Campus, Headington, Oxford that their breast cancer worries interfered with
OX3 7LF, UK. E-mail: eila.watson@dphpc.ox.ac.uk their daily lives. It has also been reported that

Received 28 May 2004


Copyright # 2005 John Wiley & Sons, Ltd. Accepted 30 November 2004
940 E.K. WATSON ET AL.

women with a FHBC have high levels of general if the focus was the impact of an intervention
distress (Audrain et al., 1998; Gilbar, 1998; Kash eected on anxiety (e.g. the impact of counselling
et al., 1992). Hence, it is important to assess the on anxiety), or described a study where the
psychological impact of mammography for this temporal relationship between mammographic
group of women. Whilst women with a FHBC screening and anxiety was not clear (i.e. not clear
may well derive considerable reassurance from a if women were anxious before invitation for
normal screening result, it is possible that the screening, or as a result of screening). Papers were
adverse consequences of being recalled for further also excluded if they were not obtainable in
tests are greater in women with a FHBC, English. Eighteen papers were excluded on the
particularly as the frequency of false positive basis of one or more of these criteria.
results may be higher in women with such a family
history (Elmore et al., 1997). This review was
carried out to assess the psychological impact of
RESULTS
mammography screening on women with a
FHBC. To our knowledge there are no previous
literature reviews addressing this specic topic. A total of seven papers assessed the psychological
impact of mammographic screening in women
with a FHBC. Four studies were specically
designed to explore the psychological impact of
METHODS mammography screening on women with a FHBC
(Absetz et al., 2003; Drossaert et al., 1996; Gilbert
A comprehensive search of four electronic data- et al., 1998; Valdimarsdottir et al., 1995), and a
bases (Medline, Cinahl, EMBASE, and Psychinfo) further three studies reported on the impact of
was conducted from the year 1982 to 2003. The screening on women with a family history,
search combined sets of terms relating to (1) breast although this was not the primary aim of the
screening or mammography (breast screen; study (Drossaert et al., 2002; Haas et al., 2001;
mammogra), (2) psychological impact (adverse Lindfors et al., 2001). These studies were very
eects; anxi; distress; nervous; psych, psycholo- heterogeneous in nature}using a variety of study
gical consequences; stress; worry) and (3) family populations, study designs, sample sizes and out-
history (fami, inher, genetic, high risk). Refer- come measures, as well as diering degrees of
ence lists from all potentially relevant papers were family history. The quality of the papers also
examined for additional papers. We also con- varied. A summary of the papers is presented in
ducted hand searching of the NHS Breast Cancer Table 1 and Table 2, but due to the heterogeneity
Screening Literature Updates from 1996 to 2003, between them the raw data have not been
which is drawn up through extensive searches of included.
the relevant journals. The psychological impact of mammography
Fifty two papers were identied by the searches. screening on women with a family history of
No additional papers were yielded through search- breast cancer is unclear:
ing of reference lists or hand searching. The 52
papers were screened by two reviewers. Twenty
ve papers were identied as potentially relevant Short term anxiety
and full text copies were obtained. We included
primary research papers that investigated the Two studies found that mammographic screen-
psychological impact of screening mammography ing induced short-term anxiety (up to six weeks) in
in women with a FHBC from invitation for initial women with normal screening results (Drossaert
screening to re-attendance at subsequent screen- et al., 1996; Valdimarsdottir et al., 1995). Dros-
ing. Papers were excluded if they described saert et al. (1996) found that mammography
patients who were diagnosed with cancer as a screening caused slightly more anxiety for women
result of screening or those who were symptomatic with a FHBC, but the absolute numbers experien-
at the time of mammography. These two groups cing moderate to severe anxiety were small.
are likely to have dierent anxiety proles from Valdimarsdottir et al. (1995) found that compared
the population of women with a family history to women in the general population without a
attending for screening. Studies were also excluded FHBC, women under 50 with a FHBC had higher

Copyright # 2005 John Wiley & Sons, Ltd. Psycho-Oncology 14: 939948 (2005)
Table 1. Design of studies assessing the psychological impact of mammographic screening on women with a family history of breast cancer

Authors Aim Design Study population Sample size and response rate

Valdimarsdottir To examine psychological dis- C Women (2150 yr) with a FHBC group, out of a sample
et al. (1995) tress in women with a FHBC FHBC according to established of 32, 26 (81%) completed both
USA guidelines (Garber et al., 1991) assessments. Population group,
who underwent mammography n=27 (recruited by advertise-
screening and received a clear ment)
result, were compared to a
group of women from the gen-
eral population who did not
have a mammogram
Drossaert et al. To compare women with a X Women (5069 yr) with a Out of a sample of 5325, 3684
(1996) FHBC to those without with FHBC (dened as having a (69%) returned their question-
The Netherlands respect to risk perception, mother or sister who had been naire, 389 had a FHBC
breast cancer anxiety and early treated for breast cancer) were
detection behaviours compared to women without
FHBC six weeks after both

Copyright # 2005 John Wiley & Sons, Ltd.


groups had been scheduled to
have a mammogram
Gilbert et al. To (a) evaluate the psychologi- C Women (5064 yr) who were Out of a sample of 2357, 2110
(1998) cal eects of false positive recalled after mammography (90%) completed the baseline
UK mammography, and (b) com- screening. Women with a FHBC assessment. 122 women who
pare the eects of recall in categorized as being twice the were recalled to the clinic com-
women with, and without, a population risk (using criteria pleted the baseline assessment,
FHBC provided by local medical genet- 35 had a FHBC (of whom 18
ics dept) were compared to were recalled solely on account
those without such a FHBC of their FHBC)
Haas et al. (2001) To examine what factors are C Women (63% of whom were Out of a sample of 797, 449
USA associated with anxiety among postmenopausal) who were re- (56%) completed the baseline
women who receive an abnor- called after mammography assessment, 94 had a FHBC
mal mammogram result screening. They explored the
role of FHBC (1st degree rela-
tive with breast cancer) in the
PSYCHOLOGICAL IMPACT OF MAMMOGRAPHIC SCREENING

amount of anxiety experienced


Lindfors et al. To compare stress experienced X Women (3091 yr) who under- Out of a sample of 276, 121
(2001) by women who had false posi- went immediate on-site diag- (44%) eligible surveys were
USA tive screening mammograms nostic imaging were compared received. 28 had a FHBC
and had undergone immediate to those who were recalled for
on-site diagnostic imaging with subsequent imaging. They also
those who were recalled for explored the role of family
subsequent imaging history (1st degree relative with
breast cancer) in the amount of
941

Psycho-Oncology 14: 939948 (2005)


stress experienced
Table 1. (Continued).
942

Authors Aim Design Study population Sample size and response rate

Drossaert et al. To (a) monitor experiences of C Women (mean age 58.3 yr). A Out of a sample of 4711, 3148
(2002) women during 3 rounds of FHBC (dened as having a (67%) completed the baseline
The Netherlands breast screening; (b) examine mother or sister who had been assessment. 346 had a FHBC
the impact of previous experi- treated for breast cancer) was
ences of reattendance; and (c) examined to see whether it was
examine which factors are asso- related to distress
ciated with the pain and distress
during screening
Absetz et al. To examine whether the psy- C Women (50 yr) at their rst Study population=1942, 535
(2003) chological impact of organized screening appointment, who had been recalled. Response
Finland mammography screening is in- were recalled after screening rate for rst question-
uenced by womens pre-exist- were compared to women with naire=63%. 70 had a 1st de-
ing experience with breast a normal result. Women who gree relative with breast cancer
cancer and perceived suscept- had experience of breast cancer and 381 knew someone else
ibility to the disease at close range (i.e. a 1st degree with breast cancer

Copyright # 2005 John Wiley & Sons, Ltd.


relative, or knew someone else
with breast cancer) were com-
pared to women with no ex-
perience

Abbreviations: FHBC=family history of breast cancer; C=cohort study; X=cross-sectional study.


E.K. WATSON ET AL.

Psycho-Oncology 14: 939948 (2005)


Table 2. Main outcomes of included studies

Authors Methods of data collection Measures Summary of ndings Limitations

Valdimarsdottir The FHBC group completed a Acute distress}POMS. Non- Compared to the population The comparison group were
et al. (1995) clinic questionnaire on the day specic distress}BSI. Cancer group, women with a FHBC not undergoing mammography
of their mammogram, and one specic distress}IES had higher levels of acute dis- screening. Small sample sizes.
month later. The population tress when they were assessed No long term follow-up
group completed question- immediately before mammo-
naires (administration method graphy, but not when assessed
not specied) at two compar- following notication of nor-
able time points one month mal results. Despite notication
apart of normal results, the FHBC
group continued to have higher
levels of non-specic distress,
avoidance, intrusive thoughts
about breast cancer. However,
distress levels at time point 2
were signicantly lower than

Copyright # 2005 John Wiley & Sons, Ltd.


distress levels at time point 1
for the FHBC group. To con-
clude, women with a FHBC
have higher levels of non-spe-
cic distress and intrusive
thoughts of breast cancer one
month after screening com-
pared to women without a
FHBC who did not undergo
screening
Drossaert et al. Postal questionnaire sent ap- Cancer specic distress}the Women with a FHBC were The Boer scale seems to be a
(1996) proximately 6 weeks after they authors shortened the scale signicantly more anxious fear of cancer measure rather
had been scheduled for a mam- used by Boer (1993) to 4 items. about breast cancer than wo- than a measure of the impact of
mogram Distress caused by mammogra- men without a FHBC. The cancer worry on individuals
phy}this was measured by 7 mammography caused slightly lives. Do not report validity of
items designed for the study more psychological distress for shortening Boer scale. Reliabil-
PSYCHOLOGICAL IMPACT OF MAMMOGRAPHIC SCREENING

women with a FHBC. But ity of measuring mammogram


overall, the percentages that anxiety 6 weeks after mammo-
experienced moderate to severe gram appointment
distress were small in all sub-
groups, indicating that the
screening program in general
did not lead to unacceptable
distress. To conclude, negative
consequences of knowing to be
943

Psycho-Oncology 14: 939948 (2005)


at increased risk of breast
Table 2. (Continued).
944

Authors Methods of data collection Measures Summary of ndings Limitations

cancer, in terms of extreme


breast cancer anxiety or high
psychological distress caused by
mammography, were not found
Gilbert et al. (a) Postal questionnaire (PQ) 6 Non-specic distress}HADS At recall, women (irrespective No measures of cancer specic
(1998) weeks prior to receipt of screen- at all time points. Acute dis- of FHBC) were more likely to distress. Some women were
ing invitation letter (b) Clinic tress}Health Questionnaire have borderline or clinically recalled solely on account of
questionnaire (CQ) immedi- (Walker et al., 1994) signicant anxiety than at base- their family history and not
ately prior to mammography/ line or screening. This raised because of an abnormal mam-
immediately after in some cases anxiety appeared to be rela- mogram. Only included women
(c) CQ at recall appointment tively transient and was not who were recalled, not women
(d) PQ 5 weeks (e) PQ 4 months detected 5 weeks post-recall. with normal ndings
later Compared with women without
a FHBC, women with a FHBC
experienced less acute screening

Copyright # 2005 John Wiley & Sons, Ltd.


related stress. However, they
were more anxious 4 months
after recall, although their an-
xiety scores tended to be lower
than at baseline. To conclude,
regardless of FH, recall was
found to induce relatively tran-
E.K. WATSON ET AL.

sient anxiety
Haas et al. (2001) (a) Structured telephone inter- Women were asked to rate their 26% of women reported being One item measure of anxiety.
view at 2 months post abnor- anxiety about their abnormal very anxious about their abnor- No validated measures of dis-
mal mammogram result (b) mammogram result on a 3- mal mammogram result at time tress. Only included women
Structured interview at 8 point scale. This information 1 and 22% reported persistent who were recalled not women
months post mammogram ult was then dichotomized into anxiety at time 2. At time 2 with normal ndings. No base-
very anxious versus less anxious women with a FHBC were line data (before women had
signicantly less anxious about screening) was collected
their mammography result than
women without a FHBC. To
conclude, at long term follow-
up women with a FHBC, who
are recalled after mammogra-
phy screening, are less anxious
about their result than women
without a FHBC
Lindfors et al. Postal questionnaire 6 weeks Screening related stress}ques- Women who had undergone Cross sectional design no fol-
(2001) after the completion of diag- tions designed for the study immediate diagnostic work-up low-up to see whether stress

Psycho-Oncology 14: 939948 (2005)


nostic imaging about the stressfulness of the experienced signicantly less levels were long lasting. No
screening and diagnostic experi- stress than those who had validated measures of distress.
ences. Respondents were also undergone later diagnostic ima- Problems due to the study
asked to indicate if their feel- ging evaluation. The observed being retrospective n.b. 6 weeks
ings, attitudes, or breast health dierence in mean stress levels after receiving nal result
practices had changed as a could not be attributed to
result of their experience group dierences in family
breast cancer history alone.
However, when age and family
history were examined together,
women younger than 50 years
who had a positive rst-degree
family history had signicantly
greater stress than did all other
women. To conclude, among
all respondents, stress from a
false-positive screening result
was greatest in women younger
than 50 with a FHBC
Drossaert et al. Women completed a postal Level of distress related to Anxiety about having a mam- Only measured anxiety about

Copyright # 2005 John Wiley & Sons, Ltd.


(2002) questionnaire 8 weeks after mammography screening was mogram was not associated the mammogram experience
they had been invited for an measured using ve items de- with having a FHBC not cancer specic or non-spe-
initial mammogram. Follow up signed for the study. Women cic distress. Retrospective nat-
questionnaires were then sent were also asked the extent to ure of the baseline
to subgroups of the sample at which they had worried about questionnaire i.e. 8 weeks after
dierent times: shortly before the test results women were invited for a
the second screening; shortly mammogram
after the second screening;
shortly before the third screen-
ing; shortly after the third
screening
Absetz et al. Postal questionnaire (PQ) (a) 1 Non-specic distress}STAI, In the normal result group, Measured breast cancer-specic
(2003) month before screening invita- BDI. Cancer-specic dis- post-screening intrusive think- concerns with single item mea-
tion; (b) PQ 2 months post tress}single items used to mea- ing of breast cancer decreased, sures. No measure of acute
screening; and (c) PQ 12 sure frequency of intrusive while among FPs it increased. distress
PSYCHOLOGICAL IMPACT OF MAMMOGRAPHIC SCREENING

months post screening thoughts, and current worry The latter became more fre-
about BC. Health related con- quent in BSE despite a simulta-
cerns}5 subscales of the IAS. neous decrease in BSE self-
Breast cancer-specic beliefs. ecacy. Experience did not
Health behaviour inuence responses to dierent
screening ndings. Women with
experience of BC were no more
distressed than those without
experience before screening.
However, at post-screening
945

Psycho-Oncology 14: 939948 (2005)


946 E.K. WATSON ET AL.

levels of both non-specic and cancer specic

1982); HADS=Hospital Anxiety and Depression Scale (Zigmond and Snaith, 1983); IAS=Illness Attitude Scales (Kellner, 1987); IES=Impact of Event Scale (Horowitz
Abbreviations: FHBC=family history of breast cancer; BDI=Beck Depression Inventory (Beck et al., 1961); BSI=Brief Symptom Inventory (Derogatis and Spencer,
anxiety one month after notication of normal
screening results, although anxiety levels were
lower than they had been on the day of their
mammograms. This study was, however, severely
limited in that the comparison group were not
Limitations

undergoing mammography. In contrast, another


study found that women with a FHBC experienced
less acute distress (i.e. distress around the time of
the actual screen) than women without such a
family history (Gilbert et al., 1998). Valdimars-
dottir et al. (1995) found that compared to women
et al., 1979); POMS=Prole of Mood Scale (McNair et al., 1971); STAI=State-Trait Anxiety Inventory (Speilberger et al., 1983).
screening irrespective of screen-
they exhibited higher levels of

mammography
distress
stayed on a moderate level. To
conclude, experience of breast

related to disease-related dis-


cancer (including a FHBC) is

in the general population, women with a FHBC


had higher levels of acute anxiety when assessed
immediately before mammography but not when
Summary of ndings

assessed following notication of normal results.


although

However, as noted above, this study was limited in


that the comparison group were not undergoing
after

screening. Another study found that anxiety about


ing nding

having a mammogram was not associated with


distress,

having a FHBC, although this was measured


tress

retrospectively approximately eight weeks after


screening (Drossaert et al., 2002).

The impact of receiving a false positive result

Several studies have explored the impact of false


positive screening ndings on women with a
FHBC. Absetz et al. (2003) and Lindfors et al.
(2001) found that whilst women who underwent
Measures

further tests before receiving a clear result did


experience increased anxiety, having a family
history did not inuence womens responses. Haas
et al. (2001) found that women with a family
history felt less anxious about their abnormal
screening result than women without a family
Methods of data collection

history of breast cancer. On the other hand,


Gilbert et al. (1998) reported that women with a
family history experienced more non-specic
anxiety four months after recall than women
without a family history, although their anxiety
scores at four months tended to be lower than at
baseline making this nding dicult to interpret.
Furthermore, half of the women with a FHBC
who were recalled, were recalled solely on account
Table 2. (Continued).

of their family history.

Longer term anxiety


Authors

Irrespective of screening result, however, Absetz


et al. (2003) found that in a group of women aged

Copyright # 2005 John Wiley & Sons, Ltd. Psycho-Oncology 14: 939948 (2005)
PSYCHOLOGICAL IMPACT OF MAMMOGRAPHIC SCREENING 947

50 undergoing screening for the rst time, experi- addition, a number of the studies had methodolo-
ence of breast cancer at close range (including a gical limitations using, for example, small sample
FHBC) was related to moderate cancer specic sizes, non-validated measures of anxiety and/or
anxiety, and that this persisted for up to 12 months inadequate study designs. Only one study in this
after screening, despite a normal screening result. review presented a comparison of baseline levels of
anxiety between the two groups (Absetz et al.,
2003). Although this study did not nd any
Predictors of response to screening dierences between the two groups, it is important
that future studies measure and report baseline
Lindfors et al. (2001) reported that anxiety levels anxiety levels so that comparisons of the magni-
in response to mammographic screening could not tude of changes pre-screening and post-normal
be attributed to group dierences in family breast result or false positive result can be made. Further
cancer history alone. However, when age and prospective studies which are designed specically
family history were examined together, women to consider both the positive and negative impact
younger than 50 years who had a positive rst- of screening on women with a FHBC are required
degree family history had signicantly greater to denitively determine the psychological impact
stress than did all other women, although this of mammographic screening for this group of
may have simply been an age eect. Similarly, as women. Women with a family history may gain
described above, Valdimarsdottir et al. (1995) considerable reassurance from participating in a
examined anxiety in a group of women with a screening programme. It is recommended that, in
FHBC aged between 21 and 50 years, and reported combination with qualitative approaches, future
a higher level of non-specic anxiety and intrusive studies should use validated measures of anxiety
thoughts of breast cancer in this group of women and worry, and should include a baseline, pre-
than women in the general population. One screening measure of anxiety. Measures of indivi-
explanation for this might be that they explored dual dierence variables, such as personality,
anxiety in a younger group of women than other coping and appraisal, should also be included in
studies in the review}the majority of which order to identify sub-groups of women who may
investigated the impact of mammography screen- be most vulnerable to adverse emotional conse-
ing in women aged 50 or above. No study reported quences of breast screening.
other potential predictors of emotional responses
to screening, such as sociodemographic factors
other than age, aspects of the screening process,
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