Is genetic counseling a stressful event?

Abstract

The aim of this paper was to investigate whether cancer genetic counseling could be considered as a stressful event and associated with more anxiety and/or depression compared to other cancer-related events for instance attending mammography screening or receiving a cancer diagnosis.
A total of 4911 individuals from three Scandinavian countries were included in the study. Data was collected from individuals who had attended either cancer genetic counseling (self-referred and physician-referred) or routine mammography screening, were recalled for a second mammograpy due to a suspicious mammogram, had received a cancer diagnosis or had received medical follow-up after a breast cancer-surgery. Data from the genetic counseling group was also compared to normative data. Participants filled in the Hospital Anxiety and Depression Scale twice: prior to a potentially stressful event and 14 days after the event.
Pre-counseling cancer genetic counselees reported significant lower level of anxiety compared to the cancer-related group, but higher levels of anxiety compared to the general population. Furthermore, the level of depression observed within the genetic counseling group was lower compared to other participants. Post-event there was no significant difference in anxiety levels between the cancer genetic counselees and all other groups; however, the level of depression reported in the self-referred group was significantly lower than observed in all other groups. Notably, the level of anxiety and depression had decreased significantly from pre-to post-events within the genetic counseling group. In the cancer-related group only the level of anxiety had decreased significantly post-event.
Individuals who attend cancer genetic counseling do not suffer more anxiety or depression compared to all other cancer-related groups. However, some counselees might need additional sessions and extended support. Thus, identifying extremely worried individuals who need more support, and allocating further resources to their care, seems to be more sufficient.

Full text

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Correspondence: A. Roshanai, Department of Public Health and Caring Sciences, Uppsala University, BMC, Box 564, 751 22 Uppsala, Sweden. Tel: ? 46
18 4713531. Fax: ? 46 18 4716675. E-mail: afsaneh.roshanai@pubcare.uu.se
*Both authors contributed equally to this work.
(Received 20 November 2010 ; accepted 7 July 2011 )
ORIGINAL ARTICLE
Is genetic counseling a stressful event?
KARIN NORDIN 1,2,* , AFSANEH ROSHANAI 1,* , CATHRINE BJORVATN 2 ,
KATHARINA WOLLF 3 , ELLEN M. MIKKELSEN 4 , INGVAR BJELLAND 2
& GERD KVALE 5
1 Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden, 2 Department of Public Health
and Primary Health Care, University of Bergen, Norway, 3 Department of Psychosocial Science, University of Bergen,
Norway, 4 Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark and 5 Department of
Clinical Psychology, University of Bergen, Norway
Abstract
Purpose. The aim of this paper was to investigate whether cancer genetic counseling could be considered as a stressful event
and associated with more anxiety and/or depression compared to other cancer-related events for instance attending mam-
mography screening or receiving a cancer diagnosis. Methods . A total of 4911 individuals from three Scandinavian countries
were included in the study. Data was collected from individuals who had attended either cancer genetic counseling (self-
referred and physician-referred) or routine mammography screening, were recalled for a second mammograpy due to a
suspicious mammogram, had received a cancer diagnosis or had received medical follow-up after a breast cancer-surgery.
Data from the genetic counseling group was also compared to normative data. Participants fi lled in the Hospital Anxiety
and Depression Scale twice: prior to a potentially stressful event and 14 days after the event. Results. Pre-counseling cancer
genetic counselees reported signifi cant lower level of anxiety compared to the cancer-related group, but higher levels of
anxiety compared to the general population. Furthermore, the level of depression observed within the genetic counseling
group was lower compared to other participants. Post-event there was no signifi cant difference in anxiety levels between
the cancer genetic counselees and all other groups; however, the level of depression reported in the self-referred group was
signifi cantly lower than observed in all other groups. Notably, the level of anxiety and depression had decreased signifi cantly
from pre-to post-events within the genetic counseling group. In the cancer-related group only the level of anxiety had
decreased signifi cantly post-event. Conclusion . Individuals who attend cancer genetic counseling do not suffer more anxiety
or depression compared to all other cancer-related groups. However, some counselees might need additional sessions and
extended support. Thus, identifying extremely worried individuals who need more support, and allocating further resources
to their care, seems to be more suffi cient.
Modern gene technology has made it possible to
identify individuals at an increased risk for genetic
diseases. Therefore, since increasing numbers of
individuals will now desire access to information
about their genetic risk for developing a disease,
genetic counseling services have become an integral
part of specialized health care system. An implicit
assumption has been that receiving information
about a potentially life-threatening event, such as a
cancer diagnosis, may cause psychological and emo-
tional diffi culties, and that genetic counseling may
facilitate adjustment to this information [1]. Neverthe-
less, information is required regarding the psychosocial
impact of genetic services upon the individual,
families and society in general.
It is anticipated that in the near future, extensive
information regarding the genetic transmission of a
number of diseases will be available and consequently
genetic counseling will have a substantial impact on
both the structure and the costs of health services.
Thus, it seems reasonable that aside from wondering
whether genetic counseling actually facilitates an indi-
viduals ’ adjustment and wellbeing, question whether
there is evidence to indicate that genetic information
may leads to signifi cant increases in personal distress
(anxiety and/or depression).
Acta Oncologica, 2011; 50: 1089–1097
ISSN 0284-186X print/ISSN 1651-226X online © 2011 Informa Healthcare
DOI: 10.3109/0284186X.2011.604343

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1090 A. Roshanai et al.
During the last decade, several systematic reviews
documenting the psychological impact of learning of
ones ’ genetic risk for developing certain illnesses have
been performed. One of the main conclusions from
these reviews is that genetic counseling does not have
any harmful effect on counselees and is effective in
reducing pre-counseling levels of anxiety, depression
and distress [2 – 6]. In a Swedish study examining the
effects of pre-symptomatic testing for breast/ovarian
and colon cancer susceptibility genes [7] the levels
of anxiety and depression among mutation carriers
were compared to both non-carriers and a normative
Swedish sample. In line with results recently pub-
lished by our research group [8], the results of the
study by Arver et al. [7] indicated that the carriers
of the cancer gene had an equal level of anxiety com-
pared to both non-carriers and the normative sample.
In that study, women being tested for breast cancer
genes fi lled in a questionnaire at the time of blood
sampling prior to the genetic counseling session and
were reported to have lower levels of depression
compared to the normative controls. In addition, as
in the majority of previous studies [2,8–10], the
results indicated a decrease in the mean level of anx-
iety over time. In a recent review on the psychologi-
cal impact of genetic testing on breast cancer patients
[6], eight papers published between 1995 and 2004
were identifi ed: all indicated that genetic counseling
was not accompanied by any increase in anxiety or
depression. However, none of the papers included in
the Sclich-Bakker review [11 – 18], compared partici-
pants level of distress to normal controls. Moreover,
controlled studies mostly compare the effect of dif-
ferent types of interventions on study groups or com-
pare the levels of anxiety, depression or distress in
one group over time [2]. Accordingly, comparing the
impact of genetic counseling on anxiety and depres-
sion to other potential stressful events, together with
comparisons between counselees and both the gen-
eral population and other groups within the health
care system, seems to be both necessary and logical.
The main aim of this paper was to study whether
genetic counseling could be considered as a stressful
event by the individuals who attend such sessions.
An additional aim was to explore whether counselees
were more anxious and/or depressed in comparison
to other large cancer-related groups within the health
care systems (e.g. individuals who are referred for
mammography or those who are treated for cancer
diseases).
The rationale was that if genetic counseling
attendees were found to be more anxious or
depressed, then there would be need for psychologi-
cal interventions to explore these emotions in depth.
Such evidence could then be taken into account
when planning and allocating resources to the future
care of individuals who demand information about
their genetic risk for a particular disease.
Participants and methods
In the current study, comparisons were made between
the level of anxiety and depression among individuals
who attended genetic counseling due to having an
increased risk for developing cancer; individuals who
attended mammography screening for non-hereditary
cancer; various cancer patients and a random sample
of the general population.
Data were collected from Sweden, Norway and
Denmark, and a total sample of 4911 participants
was included in the study. Participants from Norway
were “ self-referred ” to genetic counseling, whilst in
Sweden and Denmark participants were referred to
genetic counseling by their primary health care
physicians. This differences in referral method pre-
sented the opportunity to compare individuals who
sought genetic counseling in order to receive a risk
evaluation as a fi rst step (comparable to primary
care), to those individuals who were referred to
genetic counseling by a primary health care physician
since they were considered to be at an increased risk
for developing cancer.
Standard genetic counseling session
In current study, participants attended their fi rst
genetic counseling session. During the fi rst counsel-
ing session, the counselor usually provides informa-
tion regarding the differences between sporadic
cancer versus hereditary cancer, basic genetics, and
the risk of developing cancer as a carrier of a mutated
gene. In addition, the geneticist estimates the risk for
non-affected counselees ’ or for affected counselees ’
close relatives and supplies information about genetic
testing and surveillance programs. Counselees who
undergo genetic testing will attend an additional ses-
sion in association with the disclosure of the test
results.
All participants gave informed consent and the
study was approved by the Norwegian and Swedish
Ethical Committee, Danish National Board of Health
and the Danish Data Protection Agency.
The term “ stressful events ” referred to: attending
genetic counseling, attending a routine mammogra-
phy, being recalled for another mammography
appointment due to a previous suspicious mammo-
gram, receiving a cancer diagnosis and going for a
medical follow-up following surgery for cancer. The
different groups and events are described in more
detail both below and in Table I.
To analyze the data, the sample was divided in three
groups; a genetic counseling group, a cancer-related

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Genetic counseling, anxiety and depression 1091
group and the general population group. Data for
each group is presented separately. Comparisons
were also made between subgroups of genetic coun-
seling and cancer-related groups. Follow-up data
(14 days after the event) was not available for all
participants.
Study groups and events
The genetic counseling group
Counselees referred to the genetic counseling by a physi-
cian. Participants were recruited between September
2003 and September 2004 from four genetic outpa-
tient clinics at University Hospitals throughout Den-
mark, and one genetic clinic in Sweden over a period
of six years (1999 to 2005). The criteria for inclusion
in the study were an age above 18 years together with
at least one fi rst or second degree relatives having
been diagnosed with breast, breast/ovarian or col-
orectal cancer. Counselees were referred to the
genetic counseling by a general physician or a spe-
cialist due to being at an increased risk for develop-
ing a hereditary cancer. A consecutive sample of
674 counselees was included in this group and this
consisted of 431 participants from Denmark and
243 participants from Sweden. In Denmark 76% of
counselees who were asked to participate in the
study accepted whilst in Sweden 89% of counselees
agreed to participate. Follow-up data was only avail-
able for the Swedish counselees (n ? 216; 84%, see
Table I).
Self-referred counselees . This group consisted of individu-
als who had sought genetic counseling on their own
initiative. A total of 275 counselees from three genetic
out-patient clinics at University Hospitals in Norway
(Bergen, Trondheim and Stavanger) were asked to par-
ticipate in the study during 2003. Inclusion criteria
were as described above. A total of 221counselees
(80%) agreed to participate in the study. The majority
(65%) had a history of breast- and/or ovarian cancer,
23% had a history of colorectal cancer and 12% had a
history of both cancer forms within their families.
The cancer-related group
The routine mammography screening group . A total of
689 women attending for routine mammography
screening at two hospitals in Denmark throughout
2003 and 2004 were asked to participate in the study.
In total, 61% (n ? 417) agreed to participate and
fi lled out the questionnaire.
Women recalled for further examination due to suspicious
mammograms. In 1997, 26 086 women attended a
population-based mammography screening program
in Uppsala, Sweden. In total, 901 women (3.5%)
were then recalled for further investigation due to a
suspect result, for instance a lump in the breast. All
901 women were asked to participate in the study,
of which 509 (56%) agreed to and were included.
Cancer patients. Between October 1993 and Decem-
ber 1995, a consecutive group of Swedish patients
(n ? 729), that were either newly diagnosed or under
investigation for breast cancer (n ? 331); colorectal
cancer (n ? 154); gastric cancer (n ? 47) or prostate
cancer (n ? 197), were asked to participate in the
study. Seventy-two percent of patients (n ? 527)
accepted and agreed to participate in the study. A
subgroup of breast cancer patients (n ? 149) had
fi lled out the questionnaire before their diagnosis was
confi rmed. This created a unique opportunity
whereby the level of anxiety and depression prior to
diagnosis could also be assessed. This is often impos-
sible since patients are generally included in studies
only after having been diagnosed with cancer.
Table I. Participants ’ gender, age and available pre-and post-event HADS ∗ .
Population N
Female
gender
Age
Mean (range)
Pre-event
HADS N
Post-event
HADS N
Genetic counselling
Self-referred
Physician-referred
Cancer-related group
Routine mammography
Recalled after mammography
(suspected cancer)
Cancer diagnosis
Medical follow-up after
breast cancer surgery
General population
Total
221
674
81%
96%
43 (18 – 78)
42 (16 – 80)
213
655
186
216
417
509
100%
100%
55 (26 – 76)
54 (40 – 74)
415
508
0
0
527
45
61%
100%
64 (32 – 91)
44 (19 – 52)
149 484
45 42
2483
4911
89%
89%
52 (25 – 84)
52 (16 – 91)
2394 2394

∗ HADS: Hospital Anxiety and Depression Scale .

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1092 A. Roshanai et al.
The medical follow-up group. During 2000 and 2001
a group of 72 women diagnosed with breast cancer
in Sweden, were asked to participate in the study in
association with their fi rst medical follow-up after the
cancer surgery. In total, 63% (n ? 45) accepted and
were included in the study. The only criterion for
inclusion was being younger than 50 years of age at
the time of diagnosis. This criterion was chosen due
to a minor increased risk for hereditary cancer, but
not so high a risk level that makes genetic counseling
necessary.
The general population group. Normative data on anx-
iety and depression, using The Hospital Anxiety and
Depression Scale (HADS), were obtained from the
Nord-Trondelag Health Study (The HUNT-2
Study) [19]. The HUNT-2 study, one of the largest
health studies ever conducted, was carried out
between 1995 and 1997 with a focus on evaluating
the medical history of individual. Consequently, this
study now provides a unique database of personal
and family medical histories. Of 92 936 eligible indi-
viduals, 66 140 (71.2%) participated in the HUNT-2
study [19]. Nord-Trondelag is one of the 19 counties
in Norway and comprises 3% of the national popula-
tion. Notably, the county is fairly representative of
Norway as a whole except for a slightly lower mean
level of education. Based on the population register,
all inhabitants in the county aged ? 20 years were
invited to participate. Data collection was performed
using postal questionnaires and a clinical examina-
tion. A random sample of 2483 subjects, from the
HUNT-2 study with the same proportion of male/
female and the same age range as in the clinical sam-
ple, was included in the present study.
Instrument
The Hospital Anxiety and Depression Scale (HADS)
[20] consisting of a seven-item subscale for measur-
ing anxiety (HADS-A) and a seven-item subscale for
measuring depression (HADS-D), was the instru-
ment chosen to assess symptoms of anxiety and
depression within this study. Each item has a choice
of four responses with scores ranging from 0 (no
symptoms) to 3 (maximum symptoms). The sub-
scale scores range from 0 to 21. The HADS is exten-
sively used and has been demonstrated to possess
good psychometric properties for use within both the
normal population, and in somatic, psychiatric, and
primary care patients [21].
Procedure
Approximately half of the sample, 2428/4911 indi-
viduals fi lled out the HADS in connection with a
potential stress-full event 14 days before the event
and 14 days after the event. This data was compared
to the data from a random sample of the general
population (n ? 2483). The proportion of men (11%)
and women (89%) were equal in both samples.
Statistical analysis
Comparisons of the mean values were performed by
unpaired two-tailed t-tests. Pre to post-event changes
were investigated by paired t-tests. T-tests were used
instead of two-way ANOVA due to lack of follow-up
data for most participants. Analyses of variance
(ANOVA) were used for comparison of three or
more groups. Due to unequal sample sizes, post hoc
comparisons were performed with the Tukey ’ s Hon-
estly Signifi cantly Different (HSD) Unequal Sample
Sizes test. Post hoc test results are reported only for
comparisons between genetic counseling group (as a
whole or as self-referred and physician-referred sub-
groups) and each of the other included groups.
Results
Between-group comparisons of anxiety
and depression
Pre-event anxiety and depression. Prior to the stress-full
event, the genetic counseling group reported signifi -
cantly lower levels of anxiety (M ? 5.6), compared
to the cancer-related group (M ? 6.9), but higher
levels of anxiety compared to the general population
(M ? 4.4) [F (2.61) ? 223.3, p ? 0.001] (Table II).
However, the level of depression (M ? 2.7) reported
by the genetic counseling group was lower compared
to both the cancer-related group (M ? 3.4) and the
general population (M ? 3.5), [F (2.62) ? 31.9,
p ? 0.001] (Table II).
Post-event anxiety and depression. After counseling, no
differences in anxiety were observed between the
genetic counseling group (M ? 5.0, SD ? 4.1) and
the other groups [F (2.54) ? 17.3, p ? 0.001)]
(Table II).
The genetic counseling group reported signifi -
cantly lower levels of depression (M ? 2.3, SD ? 2.9)
compared to both the cancer-related group and
general population (M cancer-related ? 3.8, SD ? 3.7,
M general population ? 3.5, SD ? 3.1) [F(2.55) ? 57.3,
p ? 0.001] (Table II).
Between-subgroup comparisons of anxiety
and depression
The self-referred counselees reported lower levels
of anxiety both before (M ? 4.9, SD ? 3.6), and
after (M ? 4.4, SD ? 3.9) the counseling session

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Genetic counseling, anxiety and depression 1093
compared to the physician-referred counselees
(M pre-counseling ? 5.8, SD ? 4.1, M post-counseling ? 5.4,
SD ? 4.3). There was no corresponding difference
for depression between the two groups (Table IV).
Prior to the counseling session, both genetic
counseling subgroups reported lower levels of anxi-
ety compared to most of the other cancer-related
subgroups and the physician-referred group reported
higher level of anxiety compared to the general pop-
ulation [F(6.43) ? 57.3, p ? 0.001]. No signifi cant
differences in anxiety were observed between the
genetic counseling and the other included groups
post-counseling [F (3.924) ? 2.5, P ? 0.05] (Table
IVa and b).
The genetic counseling subgroups separately
reported signifi cantly lower levels of depression both
pre [F (6.44) ? 11.9, p ? 0.001] and post-counseling
[F(3924) ? 9.9, p ? 0.001] compared to most
other groups (Table IVa and b). The only exception
pre-event was that no signifi cant difference was
reported by those attending for routine mammogra-
phy and post-event no signifi cant difference was
reported between the physician-referred counselees
and the medical follow-up group (Table IVa and b).
Within-group comparisons of anxiety and depression
(changes over time)
Anxiety levels decreased signifi cantly from pre-
to-post-event measurement in both the genetic coun-
seling group [M pre-event ? 5.5, M post-event ? 5.0,
(t ? 3.7, p ? 0.001)], and the cancer-related group
[M pre-event ? 6.7, M post-event ? 5.2, SD ? 4.7, (t ? 4.6,
p ? 0.001)] (Table V).
Table II. Participants ’ mean level of anxiety and depression.
Population
Pre-event anxiety
Mean (SD)
Post-event anxiety
Mean (SD)
Pre-event depression
Mean (SD)
Post-event depression
Mean (SD)
Genetic counseling group
Cancer-related group
General population
F
5.6 (4.0)
6.9 (4.5)
4.4 (3.4)
223.3 ∗
5.0 (4.1)
5.1 (4.5)
4.4 (3.4)
17.3 ∗
2.7 (3.0)
3.4 (3.2)
3.5 (3.1)
31.9 ∗
2.3 (2.9)
3.8 (3.7)
3.5 (3.1)
57.3 ∗
Note: values for normal population were collected once, not pre and post.
∗ p ? 0.001.
Table III. Comparison of the level of anxiety and depression in genetic counseling subgroups pre- and post-event.
Population
Pre-event anxiety
Mean (SD)
Post-event anxiety
Mean (SD)
Pre-event depression
Mean (SD)
Post-event depression
Mean (SD)
Genetic counseling group
A - self-referred
B- physician-referred
Comparison A-B
4.9 (3.6)
5.8 (4.1)
t ? 2.9 a
4.4 (3.9)
5.4 (4.3)
t ? 2.4 b
2.7 (2.9)
2.6 (3.0)
t ? 0.01
2.5 (3.1)
2.7 (2.9)
t ? 0.1
p ? 0.001.
p ? 0.05.
Furthermore, the level of depression decreased
signifi cantly in the genetic counseling group from
pre-to post- event measurement [M pre-event ? 2.9,
M post-event ? 2.6, (t ? 3.1, p ? 0.001)]. However, no
signifi cant decrease in the level of depression was
observed in the cancer-related group [M pre-event ? 3.8,
M post-event ? 3.6, (t ? 1.1, p ? 0.05)] (Table V).
Within-subgroup comparisons of anxiety
and depression (changes over time)
The results from analyzing changes in the level of
both anxiety and depression over time within each
subgroup indicated that only physician-referred
counselees reported a signifi cant reduction in the
level of anxiety [M pre-event ? 6.0, M post-event ? 5.4,
t ? 3.6, p ? 0.001] and depression [M pre-event ? 3.2,
M post-event ? 2.7, (t ? 3.9, p ? 0.001)] over time
(Table VI). The only other subgroup who reported a
signifi cant decrease in anxiety post-event was the can-
cer diagnosis group [M pre-event ? 7.0, M post-event ? 5.0
(t ? 5.1, p ? 0.001)] (Table VI).
Discussion
Based on the results of this study, before attending
counseling, individuals within the genetic counseling
group, reported signifi cantly lower level of anxiety
and depression compared to those in the cancer-
related group and higher levels of anxiety and lower
level of depression compared to the general popula-
tion. Post-event, there was no difference in the level
of anxiety between the genetic counseling group and
the cancer-related group, but the level of depression