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DOI: 10.1159/000079386
Key Words
BRCA1/2 mutations W Genetic counseling W Familial
breast and ovarian cancer W Carrier, cancer mutation
Abstract
Objectives: To examine whether being a BRCA1/2 mutation carrier affects a wide array of aspects of life, and if
so, how. Methods: Participants were grouped according
to their carrier status (carrier and noncarrier status),
health status (affected or unaffected by cancer), and their
enrollment at the counseling service (probands and other family members). One hundred and sixty-five women
completed a self-administered questionnaire following
their genetic consultation session. Results: Probands/
nonprobands and carriers/noncarriers did not differ with
regard to demographic characteristics, health behaviors
including medical checkups, the distress they experience
or their resources (sense of coherence, social integration, religiosity). Individuals affected by cancer did differ
on some of these aspects from participants without cancer. Conclusions: From the results of this study, being a
carrier could not be considered a psychosocial risk factor, nor does it seem to have an effect on carriers
resources and lifestyle.
Copyright 2003 S. Karger AG, Basel
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Introduction
among most of their interviewees. This finding is not limited to qualitative studies. Vernon et al. [7], using a standard and valid measure of depression, the Center for Epidemiologic Studies Depression Scale, found that 24% of
the participants experienced symptoms of depression, a
prevalence higher than that reported for the general adult
non institutionalized population. Subgroups of counselees were targeted as being at risk and characterized. This
finding of a higher risk of distress after counseling among
some subgroups was replicated in other studies [810].
Still, the overall picture in these studies is of a significant
decrease in distress following counseling or no adverse
effect [8, 9, 1113]. Gradually, investigators concluded
that early concerns of a mental health risk have not materialized [14]. Studies which compared the distress rate of
counselees in genetic clinics to primary medical care and
community samples [11, 15] found counselees to be no
different than community samples and less distressed
than those attending primary medical care.
The first review of studies on the consequences of predictive genetic information included 9 studies with varying designs ranging from case reports (the most frequent)
to prospective designs [16]. It called for more empirical
data and for the study of more culturally diverse populations. The second review [17] included 15 studies relating
to several genetic diseases. The authors concluded that
individuals undergoing predictive genetic testing do not
experience adverse psychological consequences. They report decreased distress among both carriers and noncarriers, and pointed out that test results were rarely predictive of distress 1 month following testing; these conclusions must be interpreted with caution considering that
the findings are based on diverse genetic diseases. The
authors call attention to the fact that the pretest emotional
state was often predictive of subsequent distress, and
hence advocated pretest assessment of emotional state in
order to identify individuals in need of customized counseling [17]. In their discussion, the authors note the
absence of studies reporting cognitive or behavioral outcomes and of studies following counselees for longer than
3 years. Similar results pertaining to the absence of longterm increased distress among persons receiving positive
test results are reported by Shaw et al. [18]. Their review is
based upon 54 studies addressing several genetic diseases,
including cancer.
The fourth review [2] included 12 studies focusing on
genetic counseling for breast/ovarian cancer susceptibility. In their meta-analysis, the authors found a significant
decrease in generalized anxiety and a trend towards statistical significance in the reduction of psychological dis-
243
244
Cancer History
Several questions regarding participants cancer history were
asked. A single variable was created, reflective of responses to several
items that indicated whether the participant reported a personal cancer history (of any type).
Distress
Distress was measured by two items monitoring concern from
past difficult life events or their consequences and from ongoing
stressful situations, phrased as follows: Are you currently disturbed
(1) because of difficult life events you underwent in the past or their
consequences, or (2) because of prolonged stressful situations?
Health Behaviors
Physical Activity. Participants were asked whether they regularly
engaged in a physical activity or not, and if they did, they were asked
about the number of hours per week they engaged in this activity.
Participants also indicated the type of activity they engaged in.
Use of Hormone Replacement Therapy. These items assessed
whether the woman ever used hormone replacement therapy or not,
and whether she currently uses it.
Medical Checkups. These items assessed whether the woman
underwent periodic dental, gynecological and general checkups, as
well as a clinical breast examination. Two composite variables were
created. In the first, all of the above items were summed and scores
ranged from 0 to 4. The second composite variable included the frequency of cancer-related checkups (gynecological and clinical breast
examinations), and scores ranged between 0 and 7.
Diet. These items related to a diet high in vegetables and fruits
and low in fat, sugar, salt and calories. Items were summed and
scores ranged from 0 to 5.
Smoking and Drinking Coffee and Alcohol. These consumptive
behaviors were monitored by several items, but were later excluded
from the analyses due to homogeneity in our sample.
Psychosocial Resources
Social Integration. Integration into the social fabric was measured
as ongoing and repeated contact with others. Participants reported
thirteen activities regularly carried out with family, friends, neighbors and coworkers. Activities included, for example, talking on the
phone, going out together, lending money, asking help in the case of
emergency and engaging in sports, among others. The number of
activities was summed across copartners and activities to create a
measure of social integration.
Sense of Coherence. The short version of the questionnaire was
used. An index was computed as the mean score of the 13 items. In
our data Cronbachs was 0.84.
Religiosity. Participants placed themselves along a continuum of
religiosity, ranging from secular to ultra-orthodox. The item was
dichotomized into secular/nonsecular due to a low number of religious respondents.
Cognitive Appraisal
Self-Rated Health. Participants were asked to compare their
health to that of others their age as being similar, better or worse.
Attitude towards Early Detection. A single item was used to monitor the respondents opinion towards undergoing medical checkups
when one feels healthy.
Hagoel/Neter/Dishon/Barnett/Rennert
Analytic Strategy
Data analysis was conducted in two stages. First, descriptive statistics were generated for the demographic characteristics of the participants. Second, participants were compared along the three subgroupings, i.e. being a carrier, being a proband or being affected by
cancer, and the interaction between them. The comparisons were
conducted with regard to participants health behaviors, psychological resources, cognitive appraisals and stress. As part of the sample
included family members, we used the SAS procedures for correlated
data (version 8.2). Linear regression was used for continuous variables and logistic regression for dichotomous variables.
Results
Affected by cancer
yes
no
total
Carrier
Yes
No
53 (48.2)
25 (45.5)
57 (51.8)
30 (54.5)
110 (66.7)
55 (33.3)
Total
78 (47.3)
87 (52.7)
165 (100)
Proband
Yes
No
61 (54.9)
17 (31.5)
50 (45.0)
37 (68.5)
111 (67.3)
54 (32.7)
Total
78 (47.3)
87 (52.7)
165 (100)
yes
no
total
62 (55.9)
48 (88.9)
49 (44.1)
6 (11.1)
111 (67.3)
54 (32.7)
110 (66.7)
55 (33.3)
165 (100)
Carrier
Proband
Yes
No
Total
245
Table 2. A three-way comparison of cancer-affected status, carrier status and proband status according to health behaviors, psychosocial
Grouping variable
Carrier status
yes
no
Health behaviors
Physical activity (h)
2.80 (0.5)
Diet (no. of items, 05)
2.25 (0.19)
Medical checkups (04)
3.30 (0.09)
Cancer-related medical checkups (freq. 07) 4.96 (0.16)
Psychosocial resources
Sense of coherence index
4.63 (0.08)
Social integration (no. of activities)
20.45 (0.91)
Distress index (05)
1.85 (0.17)
Proband status
Affected by cancer
yes
yes
no
no
3.20 (0.6)
1.91 (024)
3.38 (0.11)
4.83 (0.2)
3.00 (0.5)
2.03 (0.19)
3.37 (0.09)
5.00 (0.16)
2.80 (0.67)
2.33 (0.25)
2.25 (0.12)
4.61 (0.22)
3.75 (0.54)
2.29 (0.21)
3.44 (0.1)
5.20 (0.17)
2.17 (0.54)*
1.97 (0.21)
3.23 (0.1)
4.60 (0.17)*
4.43 (0.11)
20.86 (1.33)
1.59 (0.22)
4.46 (0.09)
20.46 (0.94)
1.85 (0.18)
4.74 (0.11)*
20.79 (1.32)
1.63 (0.21)
4.45 (0.09)
20.13 (1.14)
1.97 (0.2)
4.73 (0.09)*
20.98 (1.06)
1.59 (0.18)
Results are shown as means (SE) adjusted for education and age. * p ^ 0.05.
b Dichotomous variables
Grouping variable
Health behaviors
HRT use (currently)
Psychosocial resources
Religiosity
Cognitive appraisal
Self-rated health
Attitude toward early detection1
Carrier status
Proband status
Affected by cancer
1.65 (0.515.21)
1.31 (0.414.22)
1.25 (0.413.82)
1.37 (0.523.60)
1.01 (0.442.32)
0.65 (0.281.49)
0.97 (0.442.13)
2.56 (0.798.25)
1.21 (0.522.81)
1.04 (0.333.25)
4.18 (1.839.54)*
1.04 (0.484.1)
Results are shown as OR (95% CI) adjusted for education and age. HRT = Hormone replacement therapy. * p ^ 0.05.
Adjusted for age only.
246
Hagoel/Neter/Dishon/Barnett/Rennert
Discussion
247
Acknowledgement
This study was supported by the Israel Cancer Association.
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