This material is protected by U.S. copyright law. Unauthorized reproduction is prohibited. To purchase quantity reprints,
please e-mail email@example.com or to request permission to reproduce multiple copies, please e-mail firstname.lastname@example.org.
Addressing the Support Needs of Women at
High Risk for Breast Cancer: Evidence-Based
Care by Advanced Practice Nurses
Dawn Stacey, RN, MScN, CON(C), Cathy DeGrasse, RN, MScN,
and Lisa Johnston, RN, BScN
Key Points . . .
Purpose/Objectives: To identify support needs of
women at high risk for breast cancer and enhance an
➤ Advanced practice nurses can facilitate proactive planning to
Design: Descriptive study.
identify the individualized informational, emotional, self-care,
Setting: A comprehensive, breast-health service for
and decisional support needs of women at high risk for breast
Sample: 97 high-risk women with a 1.66% or greater five-
➤ In addition to breast cancer prevention options, more younger
year risk of breast cancer, atypical hyperplasia, lobular
carcinoma in situ, or positive genetic screen.
than older high-risk women want information about hormone
Methods: A self-assessment questionnaire completed
previsit and a satisfaction survey completed postvisit.
➤ Decision support is needed for women considering genetic
Main Research Variables: Women's perceived informa-
testing, chemoprevention, and prophylactic mastectomy.
tional, emotional, and decisional support needs, current
➤ With the rapidly evolving research in breast cancer preven-
self-care practices, and satisfaction with the service pro-
tion, the challenge is to maintain an evidence-based service for
Findings: Women under age 50 (n = 54) wanted infor-
women at high risk for breast cancer.
mation on breast cancer screening, risk of breast cancer,
lifestyle options to lower risk, and hormone replacement
therapy; older women (n = 43) wanted information on risk
occur in women over age 50, with only 22% occurring in
of breast cancer, lifestyle options, breast cancer screen-
women under 50 (National Cancer Institute [NCI], 2001). In
ing, and chemoprevention. More than 75% of all women
addition to increasing age, other major risk factors for breast
wanted information to help them make decisions on
breast cancer prevention options, benefits, and risks. The
cancer include family history of breast cancer, prolonged
satisfaction survey (N = 61) revealed that most women's
menstrual history, nulliparity or giving birth to the first live
needs were met.
child at age 30 or older, and history of atypical hyperplasia or
Conclusions: Support needs were consistent with the lit-
lobular carcinoma in situ (Gail et al., 1989; Gross, 2000;
erature that focused primarily on younger women seeking
Vogel, 2000). Prevention options for high-risk women may
genetic counseling. Proactive planning assisted with ad-
include healthy lifestyle practices, chemoprevention, prophy-
dressing the needs of these women.
lactic mastectomies, and breast cancer surveillance (Gross;
Implications for Nursing: A previsit questionnaire facili-
Vogel). However, limited evidence is available to support
tates individualized proactive planning before the visit.
many of these preventive measures. With the increasing com-
However, further assessment of self-care practices and
plexity of knowledge in breast cancer prevention, advanced
emotional needs is required. Interventions should evaluate
outcomes, such as accurate risk perception, lifestyle
changes, screening follow-through, and decision quality.
Dawn Stacey, RN, MScN, CON(C), is a doctoral student in the Popu-
Advanced practice nurses require specialized skills, includ-
lation Health PhD program at the University of Ottawa and a re-
ing evidence-based risk communication, behavior modi-
search associate at the Ottawa Health Research Institute of the Uni-
fication, and decision support.
versity of Ottawa in Ontario, Canada; Cathy DeGrasse, RN, MScN,
is an advanced practice nurse in breast health/breast cancer and
Lisa Johnston, RN, BScN, is a research coordinator, both in the Ot-
reast health is an important concern for women. The
tawa Regional Women's Breast Health Centre at Ottawa Hospital
h i g h incidence of breast cancer, global breast
in Ontario. (Submitted August 2000. Accepted for publication June
health initiatives, and results of breast cancer chemo-
prevention trials have appeared to heighten the awareness of
and concern about breast cancer risk. Most breast cancers
Digital Object Identifier: 10.1188/02.ONF.E77-E84
STACEY VOL 29, NO 6, 2002
practice nurses (APNs) are challenged to understand and ad-
tress, and promote health, self-care, and appropriate use of
dress women's support needs by maintaining an evidence-
health services (Stewart, 1995). In this article, support in-
based practice that promotes health and prevents illness.
cludes addressing informational, emotional, self-care, and
The High-Risk Breast Assessment Clinic at the Ottawa Re-
gional Women's Breast Health Centre of the Ottawa Hospital
Informational and Emotional Support Needs
is a new, comprehensive, breast-health service targeted spe-
cifically for high-risk women who are concerned about their
Support needs for high-risk women have focused predomi-
breast cancer risk but not necessarily eligible for genetic coun-
nantly on younger women referred for genetic counseling
seling. Women seen in the clinic are eligible for a referral to
(Audrain et al., 1998; Hallowell, Murton, Statham, Green, &
the genetic counselor if they have a minimum 20% lifetime
Richards, 1997; Hopwood et al., 1998; Lerman et al., 1996;
breast cancer risk, based on the Claus risk prediction model,
Lloyd et al., 1996; Tessaro, Borstelmann, Regan, Rimer, &
or when a genetic mutation is known to be in their family (C.
Winer, 1997), whereas only two studies identified the needs
Gilpin, personal communication, November 30, 2000).
of women who were not seeking genetic counseling (Chal-
Women are eligible for the High-Risk Breast Assessment
mers, Thomson, & Degner, 1995; Richardson, Mondrus,
Clinic if they meet any of the absolute criteria: (a) family his-
Deapen, & Mack, 1994). In six of these eight studies, personal
tory of breast or ovarian cancer in two or more first- or sec-
risk interpretation was a need that was identified either di-
ond-degree relatives, (b) breast cancer occurring in one first-
rectly by the women (Audrain et al.; Chalmers et al.; Hallo-
or second-degree relative when bilateral or premenopausal in
well et al.) or indirectly by inaccurate self-perception of risk
onset, (c) atypical hyperplasia, (d) lobular carcinoma in situ,
(Hopwood et al.; Lloyd et al.; Richardson et al.). Other needs
or (e) a positive genetic screen. Women also are eligible if
included information about breast cancer prevention and de-
they have cumulative risk factors resulting in a 1.66% or
tection (Audrain et al.; Chalmers et al.; Hallowell et al.; Lloyd
greater five-year risk of breast cancer using the Breast Cancer
et al.), emotional support (e.g., allowing women to verbalize,
Risk Assessment Tool (NCI, 2000).
providing specific strategies for managing stress, speaking
An APN acts as the entry point to the clinic by reviewing
with other women in similar situations) related to the psycho-
all consults and telephoning women prior to mailing out a
logical stress of being at risk (Audrain et al.; Chalmers et al.;
previsit questionnaire. Using the previsit questionnaire, a
Hopwood et al.; Lerman et al., 1996; Lloyd et al.), bereave-
multidisciplinary team of breast-care experts consisting of an
ment counseling to cope with having a family member with
APN, oncologists, surgeons, a nurse research coordinator, a
breast cancer (Chalmers et al.; Hopwood et al.; Lloyd et al.),
genetic counselor, radiologists, radiology technologists, and
and decision support for genetic testing (Audrain et al.;
a social worker collectively determines the prevention and
Tessaro et al.).
screening options for each woman and identifies team mem-
Self-Care and Decision Support Needs
bers most appropriate to provide counseling and care. Ser-
vices include breast cancer risk assessment, options for breast
The American Institute for Cancer Research (AICR) (1997)
cancer prevention and early detection, supportive care (e.g.,
estimated that breast cancer risk can be reduced by one-third
information, emotional counseling, guidance in decision-
to one-half through healthy lifestyle practices. However, no
making), clinical breast examination (CBE), diagnostic imag-
recommendations exist specifically for high-risk women, and
ing, and clinical management recommendations. Follow-up
the efficacy of many lifestyle practices remains controversial
care is based on women's breast cancer risk and tailored to
given the limited and sometimes conflicting evidence (Freu-
women's selected prevention options. For example, a woman
denheim, 2001; Vogel, 2000). Primary prevention aimed at
who is not performing breast self-examination (BSE) monthly
decreasing breast cancer risk that requires self-care includes
because of lack of confidence is assessed for readiness to
limiting alcohol consumption (Longnecker, 1994), eating
learn, may be shown a video and demonstration, and is reas-
more fruits and vegetables (AICR; Gandini, Merzenich,
sessed if scheduled for a return visit. In collaboration with the
Robertson, & Boyle, 2000), increasing physical activity
multidisciplinary team, the APN provides leadership in the
(Friedenreich, Thune, Brinton, & Albanes, 1998; Verloop,
development, implementation, and evaluation of the clinical
Rookus, van der Kooy, & van Leeuwen, 2000), and avoiding
excess body weight if postmenopausal (Trentham-Dietz et al.,
The purpose of this continuous quality improvement
project, undertaken by an APN and a graduate nursing stu-
Prophylactic mastectomy and chemoprevention are primary
dent, was to further understand the support needs of women
prevention options that are potentially difficult decisions. The
at high risk for breast cancer and enhance the evidence-based
decision for prophylactic mastectomy requires considering the
service within this new high-risk breast assessment clinic.
psychological distress, risks of major disfiguring surgery, and
This project involved a literature review on the support needs
benefit of lowering breast cancer risk by 90%95% (Hartmann
of high-risk women, identification of the needs of women at
et al., 1999; Klijn, Janin, Cortes-Funes, & Colomer, 1997). In
the new clinic, analysis of women's satisfaction with the clinic
addition, the prophylactic surgery option usually is reserved for
service, and identification of implications for practice, re-
women with a genetic mutation (Armstrong, Eisen, & Weber,
search, and the APN role.
2000). Women who decide to take tamoxifen for chemo-
prevention must weigh the potential benefits and potential
harms. Potential benefits include breast cancer and bone frac-
ture risk reduction, whereas potential harms include increased
uterine cancer risk, side effects, and thromboembolic events,
Support is the provision of information, help, and emo-
such as deep vein thrombosis, stroke, and pulmonary embolism
tional comfort to enhance coping and feelings of empower-
ment, make better health-related decisions, minimize dis-
(Chlebowski & Collyar, 1999; Fisher et al., 1998).
ONF VOL 29, NO 6, 2002
Secondary prevention employs strategies to calculate risk
and screening to find cancer early (Mahon, 1995). Factors
Following telephone consultation with the APN, the self-
considered in breast cancer risk prediction models include ad-
assessment questionnaire was mailed to all women referred to
vancing age, family history of breast cancer, menstrual his-
the high-risk breast assessment clinic with instructions to re-
tory, age of first live birth, and history of atypical hyperpla-
turn it within two weeks by mail, by fax, or in person. Clinic
sia or lobular carcinoma in situ (Armstrong et al., 2000; Gail
staff booked an appointment with the women within one
et al., 1989; Gross, 2000; Vogel, 2000). Women may decide
month of receiving the questionnaire. The questionnaire pro-
whether to seek personal risk assessment. Risk assessment
vided the multidisciplinary team with information to calculate
also includes assessing genetic susceptibility for women with
risk, identify individual support needs and expectations, iden-
a strong family history of cancer; these women may need de-
tify current lifestyle and screening practices, and proactively
cision support when considering genetic testing. In a study of
p l a n care. The Ottawa Decision Support Framework
98 healthy women attending genetic counseling, 95% wanted
(O'Connor et al., 1998) and knowledge of primary and sec-
information on genetic benefits, limitations, and risks; 63%
ondary breast cancer prevention were used to guide its devel-
wanted advice and recommendations for genetic testing; and
50% wanted to discuss personal values related to genetic test-
To ascertain women's satisfaction with the service provided
ing (Audrain et al., 1998).
in the clinic, a semistructured satisfaction survey was mailed
Another secondary prevention strategy is breast cancer
with a self-addressed, stamped return envelope. The survey was
screening. Evidence for screening in high-risk women is not
mailed in May 2000 to all women seen in the clinic between
available. Women need assistance understanding the varia-
July 1999 and May 2000. The satisfaction survey, based on a
tions of current guidelines as they relate to their individual risk
survey by the Picker Institute (2000) and Picker Institute Eu-
status and make decisions about their personal plan for screen-
rope (2002), was not psychometrically tested.
ing. Screening mammography lowers mortality from breast
cancer in women aged 5069 by 25%30% and in women
aged 4049 by 15% (Kerlikowske, 1997; Swedish Cancer
Society & the Swedish National Board of Health and Welfare,
1996). Monthly BSE is encouraged by most professional
groups, despite a trial of 267,040 Shanghai women that re-
Researchers analyzed questionnaires for all 97 women seen
vealed no change in mortality rates when women in the con-
between July 1999 and May 2000 to identify women's
trol group were compared with those who received BSE in-
previsit needs and visit expectations. Of the 97 women, 54
struction (Thomas et al., 1997). The Shanghai study con-
were under age 50 with the typical women being 41 (range
cluded insufficient evidence existed to recommend BSE.
2549), having a 1.5% five-year risk of breast cancer (range
Interpretation of the evidence has resulted in variations in
0.1%4.0%), and having a family history of breast cancer
screening guidelines. The American Cancer Society (2001)
with 78% having family histories that deemed them eligible
breast cancer screening guidelines stated that all women over
for genetic counseling. The typical woman aged 50 and older
age 40 should perform BSE monthly and have a yearly CBE
was 57 years old (range 5070), had a 3.3% five-year risk of
and mammogram, whereas women aged 2039 should per-
breast cancer (range 0.7%8.1%), and had a family history of
form BSE monthly and have a CBE every three years. The
breast cancer, with 54% eligible for genetic counseling. Most
Canadian Cancer Society (2002) guidelines stated that
women were Caucasian (83% of the younger women versus
women aged 5069 should perform BSE regularly and have
98% of the older), all spoke English, and most had completed
a CBE and mammogram every two years, whereas women
postsecondary education (89% of the younger women versus
aged 4049 should perform BSE regularly and have a CBE
81% of the older).
every two years. Breast cancer screening guidelines in
Ontario for high-risk women aged 40 and older with one or
Table 1. Self-Care and Screening Practices
more relatives with breast cancer (or starting 10 years
younger than the youngest affected relative, but not before
Age < 40
30 years of age) include BSE monthly, CBE every 612
(N = 30)
(N = 24)
(N = 43)
months, and mammogram yearly (Ontario Cancer Genetics
Within one year
High-risk women want information on their personal risk for
Greater than one year
developing breast cancer and strategies for breast cancer pre-
Never had one
vention and early detection. Emotional support needs focus pri-
Clinical breast examination
marily on coping with the stress that occurs when a woman
Within one year
knows she is at risk and has a family member with breast can-
Greater than one year
cer. High-risk women considering genetic testing need decision
s u p p o r t . When making difficult decisions about
Every 26 months
chemoprevention and prophylactic mastectomy, women are
Every 711 months
likely to require support. However, most support needs identi-
Once a year
fied in the literature were focused more narrowly on subgroups
of high-risk women seeking genetic counseling. Minimal litera-
ture discussed the support needs of high-risk women in general.
Note. Because of rounding, not all percentages total 100.
STACEY VOL 29, NO 6, 2002
Table 2. Lifestyle Practices
Sixty-one of the 97 (63%) satisfaction surveys were re-
Age < 49
turned and analyzed. Ninety-three percent of the women were
(N = 43)
(N = 54)
(N = 97)
satisfied with their participation in decision making, 90% with
the information provided, and 93% with the amount of emo-
tional support (see Table 5). The high level of satisfaction was
obvious in comments such as, "This clinic is exactly what I
than seven al-
had been searching for after two immediate family members
were diagnosed with breast cancer," and "My appointment
there has set high expectations of how healthcare can be pro-
vided." One woman appreciated the emotional support and
said, "I was very impressed by the emotional support which
is given to a human being by very human beings."
Having had a mammogram within the previous year was
Despite the women's high level of satisfaction, they had sev-
reported by 86% of women aged 50 and older, 63% of women
eral suggestions for improvement. One woman asked for more
4049, and 29% of women under 40 (see Table 1). Women
"alternative solutions to be available other than Western-based
aged 4049 were less likely to report having had a CBE within
medicine." Another woman commented, "I was given excellent
the last year (73%) compared with the older or younger groups
information and counseling and then sent on my way," and she
of women (84% and 83%, respectively). Overall, 46% of the
was surprised that follow-ups were not planned (women with a
women stated that they practiced monthly BSE, although they
minimal increased risk are referred back to their physician with
reported varying degrees of confidence with their ability.
prevention options). One woman suggested that a take-home
For all women, 13% consumed more than seven alcoholic
form be provided that summarized her estimated breast cancer
drinks a week and 8% smoked (see Table 2). Physical activ-
risk and listed options. Finally, 100% of the women stated that
ity, intake of fruits and vegetables, and body weight were not
they would recommend the clinic to family and friends.
documented routinely; however, many women were observed
to have excess body weight.
The main reason for referral was having a family history of
breast cancer. Other reasons included confirmation as a breast
cancer gene carrier or a desire for information on the current
Support needs of high-risk women found in the previsit ques-
tionnaire were similar to those reported in the literature. The
common information needs (e.g., personal risk of breast cancer,
healthy lifestyle practices, screening guidelines) are consistent
The most common information needs identified, in order of
with those identified by women with a family history of breast
importance, by more than half of the women in both groups
cancer including younger women seeking genetic counseling
were personal risk factors, breast cancer screening, lifestyle
(Audrain et al., 1998; Chalmers et al., 1995; Hallowell et al.,
options, steps in decision making about breast cancer prevention,
1997; Hopwood et al., 1998; Lerman et al., 1996; Lloyd et al.,
1996; Richardson et al., 1994; Tessaro et al., 1997). The refer-
chemoprevention trial, hormone replacement therapy, genetic
testing, and the use of tamoxifen (see Table 3). The main differ-
ring physician, however, may have influenced the need for in-
formation on chemoprevention. In this continuous quality-im-
ences for information needs were that more women under age
50 wanted to know about breast cancer screening (93% versus
provement project, women were satisfied with the information
77%) and hormone replacement therapy (70% versus 54%),
and emotional support provided, even though emotional sup-
port needs were not explicitly measured. In the clinic, some
whereas more older women wanted to know about the chemo-
prevention trial (72% versus 60%). Seventy-five percent of all
women discussed their distress related to a family history of
women identified that information (e.g., options, benefits, risks)
breast cancer and consequently received emotional support or
would be most helpful in making breast health-related decisions,
ongoing grief counseling. The literature review highlighted
emotional and bereavement support needs and suggested that
whereas 62% identified needing guidance in how to consider
personal values related to prevention options (see Table 4).
when these needs were not addressed, women experienced
Table 3. Informational Support Needs
Age 50+ (N = 43)
Age < 49 (N = 54)
Both Groups (N = 97)
Topics Women Wanted to Discuss
Personal risk of breast cancer
Breast cancer screening
Hormone replacement therapy
ONF VOL 29, NO 6, 2002
Table 4. Decisional Support Needs
Currently, the previsit questionnaire provides insight into the
information and decision support needs and allows for individu-
Both groups Age < 49
alized proactive planning. The questionnaire now includes fur-
Support Needs for Making
(N = 97)
(N = 54)
(N = 43)
ther assessment of self-care practices such as body weight and
exercise patterns. Nutritional intake is explored at the consul-
tation visit. The assessment of emotional support needs and tim-
ing of such an assessment requires careful consideration.
Information on options,
benefits, and risks
Lerman et al. (1996) measured breast cancer-specific distress
Guidance in values clarifi-
using the Impact of Event Scale. This scale could be evaluated
for its usefulness in clinical practice with measurement made at
Learning about sources of
or before the first visit and again postvisit.
information and support
Interventions for women at the high-risk breast assessment
Information on how others
clinic include verbal and written general information based on
have made the decision
their informational, self-care, and decisional support needs.
Subsequent to the findings in this project, a take-home pack-
age of personalized information is under development. With
higher levels of psychological distress (Hopwood et al.; Kash,
a clinical and research focus on nutrition as a prevention strat-
Holland, Osborne, & Miller, 1995; Lloyd et al.). Psychological
egy, the accessibility to a dietitian, either through referral or
distress was associated negatively with women's adherence to
as part of the team, is being explored. Yet, the establishment
breast cancer screening (Kash, Holland, Halper, & Miller, 1992;
and maintenance of healthy lifestyle practices is a complex
Lerman, Kash, & Stefanek, 1994; Lerman et al., 1996).
process with physical, psychological, social, and cultural im-
The high level of adherence to screening mammography
plications (Pender, 1996). Therefore, further research is re-
for women aged 50 and older at this clinic was consistent with
quired to determine interventions to address the support needs
women who were seeking genetic counseling (Evans, Blair,
of high-risk women. In a pilot study by Kash et al. (1995), 20
Greenhalgh, Hopwood, & Howell, 1994; Lloyd et al., 1996).
high-risk women were assigned to either a control group or a
The appropriate use of mammography in women under age 50
six-week psychoeducational intervention group that provided
would require further investigation to determine which is con-
education about personal risk and breast cancer prevention
sistent with risk-based recommendations (Ontario Cancer Ge-
and screening, facilitated problem solving by focusing on ac-
netics Network, 1999). At the high-risk breast assessment
tive coping, and provided emotional support. Women in the
clinic, cancer prevention self-care needs included performing
intervention group estimated their risk more accurately, had
monthly BSE and establishing healthy body weight.
improved knowledge of breast cancer, and were more adher-
Women wanted guidance in decision making. More specifi-
ent to breast cancer screening. Finally, a decision aid consist-
cally, they wanted information on breast cancer prevention
ing of an audio-guided booklet that provides information on
(e.g., options, benefits, risks), as well as help clarifying their
breast cancer, risk factors, breast cancer screening, options to
values related to prevention options. These results are consis-
lower risk (e.g. lifestyle, tamoxifen, clinical trial), outcome
tent with decisional support needs of women considering ge-
probabilities, others' opinions, and guidance in decision-mak-
netic testing (Audrain et al., 1998). After visiting the clinic,
i n g was developed and is being evaluated. (Visit
women felt comfortable asking questions and were satisfied
with their involvement in decision making.
decision_aids.asp to learn more about decision aids and this
Implications for Practice and
booklet.) This aid is designed to help women aged 50 and
older prepare for consultation with a breast health practitio-
ner and make a decision about chemoprevention (Stacey,
Based on the results of this project, practice and research
Improvement in clinical programs requires continuous
implications include three areas: assessment of needs, interven-
evaluation of outcomes. One option is to reevaluate support
tions to address needs, and further evaluation of the service.
Table 5. Satisfaction With Care
Aspect of Care
Informational needs met
Emotional needs met
Involved in decision making
Recommend clinic to others
Overall quality of care
N = 61
STACEY VOL 29, NO 6, 2002
Table 6. Advanced Practice Nurse Role in Addressing the Needs of High-Risk Women
Advanced Practice Roles
Women's Self-Identified Needs
Breast Cancer Prevention
Self-referral or physician refer-
Act as entry point.
ral to breast health services
Provide written plan for follow-up
Collaborate with women to advocate for
and summary of options.
Develop educational resources that are ap-
propriate culturally, socially, and education-
ally for the population.
Develop programs in response to needs of
Lifestyle practices (e.g., eat-
Priority of information needs
Assess factors that have an impact on healthy
ing fruits and vegetables,
Personal risk of breast cancer
tion and illness
Healthy lifestyle practice (e.g.,
Provide behavioral modification counseling.
Avoiding carcinogens (e.g.,
physical activity, weight loss,
a l c o h o l , excess body
Encourage participation of significant others.
Breast cancer screening (e.g.,
Assess risk perception and risk.
Determine genetic susceptibility.
(e.g., tamoxifen, investiga-
Provide pregenetic testing education.
Interpret risk tailored to each woman.
Surgical interventions (e.g.,
Provide bereavement counseling, organize
programs or groups.
Risk identification (e.g., risk
factors, genetic susceptibil-
Educate others on healthy lifestyle and screen-
ing guidelines based on level of risk.
B r e a s t cancer screening
( e . g . , mammography,
Provide evidence-based clinical practice.
clinical breast examination,
Participate in studies targeting health promotion.
Decision support needs
Provide evidence-based information to women.
Provide information on options,
Interpret new technologies.
benefits, and risks.
Enable women to make informed choices.
Help clarify personal values.
Information and Internet
Guide in decision making.
Guide in decision making for
Appropriate means to pro-
health-related decisions, such
vide information to women
Educate others on new technologies--risks,
as chemoprevention, genetic
benefits, and impact on care anf health.
testing, or prophylactic mas-
Evaluate impact of new technologies on health.
Participate in supportive care research (e.g.,
breast cancer prevention decision aid).
Learn about new technologies.
Empower women to identify their needs.
Provide support in coping with
Use previsit self-assessment questionnaire to
the knowledge of being at
address their needs.
Clients planning and making
Enable women to be active in planning and
making health-related decisions.
Facilitate women helping other
women by participating in re-
Work with women to identify needs.
s e a r c h and encouraging
Advocate for getting these needs met.
women to attend breast
Collate needs from previsit self-assessment.
Provide further explanation for
Administer satisfaction survey.
the previsit self-assessment
Facilitate focus groups.
Conduct participatory action research.
Perform a community assessment.
needs after the visits using a questionnaire similar to the one
fluencing outcomes, such as lifestyle behavioral changes and
for previsits. To further evaluate satisfaction with the service,
adherence to screening, decisions made, and chemoprevention
subsequent surveys should be administered at consistent time
could be studied using a continuous quality improvement
points after their initial visits. Finally, other interventions in-
approach or more formal research.
ONF VOL 29, NO 6, 2002
Implications for the Advanced Practice
1996). In a review of studies using the concept of self-efficacy
in cancer prevention, several studies demonstrated that higher
self-efficacy predicted increased confidence in performing
Given the complexity of knowledge and skills required in
BSE and participation in breast cancer screening (Lev, 1997).
breast cancer prevention, APNs are challenged to maintain evi-
APNs should consider the roles of others, such as dietitians,
dence-based practice when addressing the needs of high-risk
social workers, and exercise specialists in addressing the
women from both program and individualized perspectives. An
needs of high-risk women. Zimmerman and Connor (1989)
oncology APN is a nurse who has graduate education with ex-
found that family members had a positive influence on chang-
panded clinical, theoretical, and research-based knowledge and
ing exercise and fat consumption behaviors.
skills that are used in the provision of care to individuals with
Decision support: APNs can interpret new options, such as
an actual or potential diagnosis of cancer (Oncology Nursing
chemoprevention, that are available for high-risk women and
Society, 2001; Spross & Heaney, 2000). Although the compe-
enable women to make decisions that are informed, consistent
tencies of APNs are grouped into five main areas (i.e., clinical
with personal values, and acted on, and ones in which both the
practice, education, collaboration/consultation, research, and
decision and process used to reach the decision are satisfac-
leadership), the effective interaction, blending, and simulta-
tory (O'Connor et al., 1998). A theoretical approach that
neous execution of the skills, knowledge, judgment, and inter-
APNs could consider for guiding high-risk women in deci-
personal attributes in highly complex practice environments are
sion-making is the Ottawa Decision Support Framework
what characterize advanced nursing practice (Canadian Nurses
(O'Connor et al.; Stacey, Jacobsen, & O'Connor, 1999). This
Association, 2000; Hamric & Spross, 1989). At the High-Risk
framework uses a three-step process to assess determinants of
Breast Assessment Clinic, the APN contributes to program de-
decisions to identify needs, provide decision support to ad-
velopment and evaluation and partners with high-risk women
dress suboptimal determinants, and evaluate the decision-
to help them identify and meet their needs (see Table 6). Spe-
making process and outcomes. Determinants of decisions in-
cialized skills required include risk communication, behavior
clude perceptions of the decision (e.g., knowledge of options,
modification, and decision support.
benefits, risks, expectations of outcomes, values associated
Risk communication: Helping women understand their risk
with outcomes), perceptions of others, personal and external
for breast cancer is an important role for APNs (MacDonald,
resources, and characteristics of the client and practitioner.
1997). Risk perception was not routinely documented in the
Decisions about chemoprevention, genetic testing, and pro-
clinic, although the literature reports that women overestimate
phylactic mastectomy fit well with this framework, given that
their risk for breast cancer, only contributing further to their
these decisions have no clear correct choice, they have uncer-
emotional distress (Hopwood et al., 1998; Lloyd et al., 1996).
tain outcomes, patients' values influence the decisions, and
Most women in the clinic stated that they were relieved because
more effort is required for deliberation than implementation.
their actual risk was less than their perceived risk; perceived risk
now is elicited on the previsit questionnaire. In another study,
women had poor recall of their personal risk unless a letter was
sent in follow-up to clinic counseling (Evans et al., 1994). To
Given the informational, emotional, self-care, and decisional
help women understand risk, APNs need to clarify women's
support needs of high-risk women and new prevention options,
perceptions of their risk and provide written and verbal expla-
such as chemoprevention, breast cancer risk is an important but
nations. APNs also can provide education about breast cancer
complex health issue. By addressing their needs, nurses can
genetic testing and verify women's eligibility for genetic test-
help women to understand their risk more accurately, feel re-
ing. In one study, APNs proved to be equally effective in pro-
assured and satisfied with their care, and take steps forward in
viding education about genetic testing when compared to ge-
cancer prevention. This project indicated that risk management
netic counselors (Bernhardt, Geller, Doksum, & Metz, 2000).
can be individualized and adaptive. APNs with advanced
Behavior change: APNs can enable women to identify
knowledge and skills that include program development, risk
their needs for action and support women to adopt healthy
communication, behavior modification, and decision support
lifestyle practices. Specific areas that require consideration are
have an important role in addressing the support needs of high-
performing monthly BSE and weight management. Using the
risk women and maintaining an evidence-based service.
principles of behavior change theory, APNs can provide guid-
ance in assessing multiple factors affecting healthy practices,
Author Contact: Dawn Stacey, RN, MScN, CON(C), can be
providing appropriate counseling interventions, and evaluat-
reached at email@example.com, with copy to editor at rose_mary@
ing outcomes through research (Bandura, 1997; Pender,
American Cancer Society. (2001). Breast cancer: Early detection. Retrieved
Bandura, A. (1997). Self-efficacy: The exercise of control. New York: W.H.
May 3, 2002, from http://www.cancer.org/eprise/main/docroot/CRI/con-
Bernhardt, B.A., Geller, G., Doksum, T., & Metz, S.A. (2000). Evaluation
American Institute for Cancer Research. (1997). Food, nutrition, and the
of nurses and genetic counselors as providers of education about breast
prevention of cancer: A global perspective. Washington, DC: Author.
cancer susceptibility testing. Oncology Nursing Forum, 27, 3339.
Canadian Cancer Society. (2002). Breast health. Retrieved May 3, 2002,
Armstrong, K., Eisen, A., & Weber, B. (2000). Assessing the risk of breast
cancer. New England Journal of Medicine, 342, 564571.
Canadian Nurses Association. (2000). Advanced nursing practice: A na-
Audrain, J., Rimer, B., Cella, D., Garber, J., Peshkin, N., Ellis, J., et al.
tional framework. Ottawa, Ontario: Author.
(1998). Genetic counseling and testing for breast-ovarian cancer suscepti-
bility: What do women want? Journal of Clinical Oncology, 16, 133138.
Chalmers, K., Thomson, K., & Degner, L.F. (1995). Information, support,
STACEY VOL 29, NO 6, 2002
and communication needs of women with a family history of breast can-
psychological morbidity and health beliefs in women attending for ge-
cer. Cancer Nursing, 19, 204213.
netic counseling. British Journal of Cancer, 74, 482487.
Chlebowski, R.T., & Collyar, D.E. (1999). Technology assessment breast
Longnecker, M.P. (1994). Alcoholic beverage consumption in relation to
cancer risk reduction strategies: Tamoxifen and raloxifene. Alexandria,
risk of breast cancer: Meta-analysis and review. Cancer Causes and
Control, 5(1), 7382.
VA: American Society of Clinical Oncology, Health Services Research
MacDonald, D.J. (1997). The oncology nurse's role in cancer risk assess-
ment and counseling. Seminars in Oncology Nursing, 13, 123128.
Evans, D.G., Blair, V., Greenhalgh, R., Hopwood, P., & Howell, A. (1994).
The impact of genetic counseling on risk perception in women with a
Mahon, S.M. (1995). Prevention and early detection of cancer in women.
family history of breast cancer. British Journal of Cancer, 70, 934938.
Seminars in Oncology Nursing, 11, 88 102.
National Cancer Institute. (2000). Breast cancer risk assessment tool. Re-
Fisher, B., Joseph, P., Costantino, D., Wickerham, D.L., Redmond, C.K.,
Kavanah, M., et al. (1998). Tamoxifen for prevention of breast cancer:
trieved April 30, 2002, from http://bcra.nci.nih.gov/brc/
National Cancer Institute. (2001). Breast cancer. Retrieved April 30, 2002,
Report of the National Surgical Adjuvant Breast and Bowel project P-1
study. Journal of the National Cancer Institute, 90, 13711388.
Freudenheim, J. (2001, May). Nutrition in the epidemiology of breast can-
O'Connor A.M., Tugwell P., Wells G.A., Elmslie, T., Jolly, E., Holling-
cer. Paper presented at the 2nd Scientific Conference of the Canadian
worth, G., et al. (1998). A decision aid for women considering hormone
therapy after menopause: Decision support framework and evaluation.
Breast Cancer Research Initiative, Quebec City, Quebec.
Patient Education and Counseling, 33, 267279.
Friedenreich, C.M., Thune, I., Brinton, L.A., & Albanes, D. (1998). Epide-
Oncology Nursing Society. (2001). The role of the advanced practice nurse
miologic issues related to the association between physical activity and
breast cancer. Cancer Supplement, 83, 600610.
in oncology care. Retrieved May 3, 2002, from http://www.ons.org/xp6/
Gail, M.H., Brinton, L.A., Gyar, D.P., Corle, D.K., Green, S.B., Scharirer,
C., et al. (1989). Projecting individualized probabilities of developing
breast cancer for white females who are being examined annually. Jour-
Ontario Cancer Genetics Network. (1999). Ontario Cancer Genetics Net-
nal of the National Cancer Institute, 81, 18791886.
work consensus recommendations for breast cancer risk management in
familial breast/ovarian cancer. Toronto: Author.
Gandini, S., Merzenich, H., Robertson, C., & Boyle, P. (2000). Meta-analy-
Pender, N.J. (1996). Health promotion in nursing practice. Stanford, CT:
sis of studies on breast cancer risk and diet: The role of fruit and vegetable
consumption and the intake of associated micronutrients. European Jour-
Appleton & Lange.
nal of Cancer, 36, 636646.
Picker Institute. (2000). Surveys. Boston: Author. Retrieved April 3, 2000,
Gross, R.E. (2000). Breast cancer: Risk factors, screening, and prevention.
Seminars in Oncology Nursing, 16, 176184.
Picker Institute Europe. (2002). Sample questions. Retrieved May 3, 2002,
Hallowell, N., Murton, F., Statham, H., Green, J.M., Richards, M.P.M.
(1997). Women's need for information before attending genetic counsel-
Richardson, J.L., Mondrus, G.T., Deapen, D., & Mack, T.M. (1994). Future
ing for familial breast or ovarian cancer: A questionnaire, interview, and
challenges in secondary prevention of breast cancer for women at high
observational study. British Medical Journal, 314, 281283.
risk. Cancer Supplement, 74, 14741481.
Hamric, A.B., & Spross, J.A. (1989). The clinical nurse specialist in theory
Spross, J.A., & Heaney, C.A. (2000). Shaping advanced nursing practice in
and practice. Philadelphia: Saunders.
the new millennium. Seminars in Oncology Nursing, 16, 1224.
Stacey, C.D. (2000). Development and evaluation of a breast cancer preven-
Hartmann, L.C., Schaid, D.J., Woods, J.E., Crotty, T.P., Myers, J.L., Arnold,
tion decision aid to address the needs of women aged 50 and older at
P.G., et al. (1999). Efficacy of bilateral prophylactic mastectomy in
women with a family history of breast cancer. New England Journal of
high risk for breast cancer. Unpublished master's thesis, University of
Medicine, 340, 7784.
Ottawa, Ontario, Canada.
Hopwood, P., Keeling, F., Long, A., Pool, C., Evans, G., & Howell, A. (1998).
Stacey, C.D., Jacobsen, M.J., & O'Connor, A.M. (1999). Nurses guiding
breast cancer-related decisions: A decision support framework. Innova-
Psychological support needs for women at high genetic risk of breast can-
cer: Some preliminary indicators. Psycho-oncology, 7, 402412.
tions in Breast Cancer Care, 4(3), 7181.
Kash, K.M., Holland, J.C., Halper, M.S., & Miller, D.G. (1992). Psychologi-
Stewart, M.J. (1995). Social support, coping, and self-care: Public partici-
pation concepts. In M.J. Stewart (Ed.), Community nursing (pp. 89124).
cal distress and surveillance behaviors of women with a family history of
breast cancer. Journal of the National Cancer Institute, 84, 2430.
Kash, K.M., Holland, J.C., Osborne, M.P., & Miller, D.G. (1995). Psycho-
Swedish Cancer Society & Swedish National Board of Health and Welfare.
logical counseling strategies for women at risk of breast cancer. Journal
(1996). Breast-cancer screening with mammography in women aged 40
of the National Cancer Institute Monographs, 17, 7379.
49 years. International Journal of Cancer, 68, 693699.
Kerlikowske, K. (1997). Efficacy of screening mammography among women
Tessaro, I., Borstelmann, N., Regan, K., Rimer, B.K., & Winer, E. (1997).
aged 40 to 49 and 50 to 69 years: Comparison of relative and absolute
Genetic testing for susceptibility to breast cancer: Findings from women's
benefit. Journal of the National Cancer Institute Monographs, 22, 7986.
focus groups. Journal of Women's Health, 6, 317327.
Klijn, J.G., Janin, N., Cortes-Funes, H., & Colomer, R. (1997). Should pro-
Thomas, D.B., Gao, D.L., Self, S.G., Allison, C.J., Tao, Y., Mahloch, J., et
phylactic surgery be used in women with at high risk of breast cancer?
al. (1997). Randomized trial of breast self-examination in Shanghai:
European Journal of Cancer, 33, 21492159.
Methodology and preliminary results. Journal of the National Cancer
Institute, 89, 355365.
Lerman, C., Kash, K., & Stefanek, M. (1994). Younger women at increased
risk for breast cancer: Perceived risk, psychological well-being, and sur-
Trentham-Dietz, A., Newcomb, P.A., Storer, B.E., Longnecker, M.P., Baron,
veillance behavior. Journal of the National Cancer Institute Monographs,
J., Greenberg, E.R., et al. (1997). Body size and risk of breast cancer.
American Journal of Epidemiology, 145, 10111019.
Lerman, C., Schwartz, M.D., Miller, S.M., Daly, M., Sands, C., & Rimer, B.
Verloop, J., Rookus, M.A., van der Kooy, K., & van Leeuwen, F.E. (2000).
(1996). A randomized trial of breast cancer risk counseling: Interacting
Physical activity and breast cancer risk in women aged 20 54 years.
effects of counseling, education level, and coping style. Health Psychol-
Journal of the National Cancer Institute, 92, 128135.
ogy, 15(2), 7583.
Vogel, V.G. (2000). Breast cancer prevention: A review of current evidence.
CA: A Cancer Journal for Clinicians, 50, 156170.
Lev, E.L. (1997). Bandura's theory of self-efficacy: Applications to oncol-
ogy. Scholarly Inquiry for Nursing Practice, 11(1), 2137.
Zimmerman, R.S., & Connor, C. (1989). Health promotion in context: The
effects of significant others on health behaviour change. Health Educa-
Lloyd, S., Watson, M., Waites, B., Meyer, L., Eeles, R., Ebbs, S., et al.
tion Quarterly, 16(1), 5775.
(1996). Familial breast cancer: A controlled study of risk perception,
ONF VOL 29, NO 6, 2002