NcXHF

CHRISTINE HOLMBERG
bers of women interested in and willing to take chemoprevention
drugs compared to studies that have assessed actual
behavior. 16,31,35,36 Kaplan et al 35 and Salant et al 37 present
studies that may be illuminating in this regard. To study potential
acceptance of chemoprevention in a sample of women
with diverse ethnic and racial backgrounds, Kaplan et al surveyed
women through their primary care networks. The authors
developed a generic information guide on tamoxifen
that included information on who is at high risk for breast
cancer, the ability of tamoxifen to reduce breast cancer risk,
and the drug’s side effects. These facts were all presented as
probabilities using an easy to understand visual format. In
this study, more than 40% of women indicated that they
would be likely or very likely to take tamoxifen if they were
determined to be at high risk of breast cancer. When reading
these study results, however, one must take into account the
fact that the women sampled were not high risk, but women
in the general population, and thus they merely hypothesized
that if they were at high risk, they would be likely to take the
drug. Given this fact, and in the light of some of the previously
presented studies, one may ask what “to be at risk of
developing breast cancer” actually means to laywomen,
health professionals, and researchers.
The study of Salant et al 37 found that risk meant different
things to the medical staff and to the women deemed to be at
risk by the medical staff. Although the women were aware of
their objective risk estimate level, they were more concerned
about their personal feelings regarding being at risk, which
were influenced by bodily signs and symptoms and not by
population-derived probabilities. Feeling at risk is thus likely
to be very different from being told that one is at risk. 38
The term “risk” means very different things in epidemiology
and medical care compared to everyday language. In everyday
language, risk is typically associated with danger. 39 A
probability of 1.66% may therefore not feel like much of a risk
at all. When women answer that they would take action if
determined to be at risk, it is thus very likely that they have
other constructs in mind than the probabilistic concepts of
the Gail model. For example, Dillard et al 40 found an association
between anxiety and women’s intention to
gather additional information about tamoxifen and take
the drug in the next few months. The psychological construct
of anxiety may be more similar to individuals’ connotations
of risk than probabilistic concepts of risk and
risk perception.
DECISION MAKING
As discussed above, decision making about whether or not to
take chemoprevention to reduce breast cancer risk involves
complex risks and trade-offs and should be based on an individual’s
preferences rather than on population-based standards.
The prerequisite to enable such decision making is
presentation of the involved risks and benefıts in a way that is
understandable, even to low-numerate populations. 41 Nevertheless,
even when risks and benefıts appear to be understood,
willingness to take chemoprevention remains low
among women who are eligible on the basis of their Gail
score. Other research has shown that health decision making
may not be based on an accurate understanding of risk information,
but perhaps more on heuristics and feelings. 42,43
Feelings, assumptions, and experiences influence how risk
information is perceived. As such, individuals may not always
use the risk information presented to them in the ways
that health care providers intend. 44
The accumulating evidence that personalized risk information
may not be as successful as previously thought in initiating
particular health behaviors may also point to an
increasing gap between approaches to treatment decision
making using personalized risk information as advocated
in health care, and the approaches of the individuals,
which rely on feelings and heuristics. Various perceptions
surrounding chemoprevention—that tamoxifen is a “cancer
drug,” fear of medication side effects, differences in the
understanding of risk between laywomen and health care
providers, a lack of knowledge about chemoprevention,
and societal opinions of medication intake—provide the
framework within which decision making takes place.
Health care providers should be aware that counseling
may be neither as effective nor as influential in terms of
decision making as they assume, 27 since decisions may be
based on perceptions that are influenced by an individual’s
family history, societal assumptions, and culture as much
as, or even more than, the information and guidance offered
by individual health care providers. 45
IMPLICATIONS
There are several avenues through which women may be diagnosed
as being at an increased risk for developing breast
cancer and offered SERM treatment for risk reduction. For
example, a family history of the disease, positive genetic evaluation,
a history of LCIS or AH, or a Gail score higher than
1.66% are all indications for offering women SERMs as a
treatment option. The risk–benefıt trade-offs vary depending
on the avenue through which a woman comes to be at risk
for breast cancer. These different reasons for being or becoming
at risk may also be important for decision making in this
context since they may influence how an individual perceives
the risk and, perhaps more importantly, to what degree she
feels at risk.
Disclosures of Potential Conflicts of Interest
The author(s) indicated no potential conflicts of interest.
e62
2015 ASCO EDUCATIONAL BOOK | asco.org/edbook