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Breast cancer survivors' attitudes about communication of breast cancer risk to their children.

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American Journal of Medical Genetics Part C (Semin. Med. Genet.) 119C:45 – 50 (2003)
A R T I C L E
Breast Cancer Survivors’ Attitudes About
Communication of Breast Cancer Risk
to Their Children
SUSAN MIESFELDT,* WENDY F. COHN, SUSAN M. JONES, MARY E. ROPKA,
AND JENINE C. WEINSTEIN
Perceptions of breast cancer survivors regarding educating their children about hereditary breast cancer risk are
underexplored. This study examined attitudes of early-onset breast cancer survivors concerning whether, at what age,
and how their children should be educated about potential risk for hereditary breast cancer. Women with breast
cancer diagnosed < age 50 years between 1994 and 1997 were recruited from 34 Virginia hospitals. Participants
responded to two surveys. The Family History Questionnaire permitted participant classification into two groups based
on risk for hereditary disease, as determined by personal and family history. The Knowledge, Attitudes and Beliefs
Questionnaire addressed participants’ concerns regarding their children’s breast cancer risk, perceptions of their
children’s concerns about their own risk, and whether, at what age, and from what source their children should be
informed about their own risk. Among 267 participants, the average age was 47.5 years; 90% were Caucasian, 7%
were African American; 52% had suspected hereditary breast cancer. Of participants with children, 81% indicated
concern about their children’s breast cancer risk; 55% reported that their children had expressed concern about their
own risk. Seventy-one percent of participants believed the age for informing children about hereditary breast cancer
risk to be before 18 years. Eighty-four percent cited the child’s parents and 65% cited health professionals as a
preferred information source. No differences in responses between participants with suspected hereditary breast
cancer versus presumed sporadic breast cancer were noted. These data establish the need for educational resources
regarding hereditary breast cancer for children of early-onset breast cancer survivors. ß 2003 Wiley-Liss, Inc.
KEY WORDS: attitudes; children; concerns; education; families; genetic counseling; hereditary breast cancer
INTRODUCTION
Scientific advances have resulted in the
ability to predict genetically increased
risk for a number of common adultonset disorders, including breast cancer.
Difficult issues may arise for the patient
and family as they address their risk for
hereditary breast cancer, as well as the
ways to manage this risk. Some of
the most sensitive of these issues
relate to the impact of risk assessment
on other family members, particularly
children.
Despite a plethora of articles that
have addressed the issue of genetic testing of children for adult-onset disorders
[Harper and Clarke, 1990; Clarke et al.,
1994; Wertz et al., 1994; American
Society of Human Genetics Board of
Directors and the American College of
Medical Genetics Board of Directors,
1995; Michie and Marteau, 1996;
Patenaude, 1996; Geller et al., 1997;
McKinnon et al., 1997; Task Force on
Genetic Testing, 1997; Cohen, 1998;
Dickenson, 1999; Kodish, 1999; Eiger
and Harding, 2000; American Academy
Susan Miesfeldt, M.D., is an Associate Professor in the Department of Internal Medicine at the
University of Virginia Health System in Charlottesville, Virginia.
Wendy F. Cohn, Ph.D., is an Assistant Professor in the Department of Health Evaluation
Sciences at the University of Virginia Health System in Charlottesville, Virginia.
Susan M. Jones is a Genetic Counselor at the Cancer Center, the University of Virginia Health
System, in Charlottesville, Virginia.
Mary E. Ropka, Ph.D., is an Associate Professor in the Department of Health Evaluation
Sciences at the University of Virginia Health System in Charlottesville, Virginia.
Jenine C. Weinstein is a Research Assistant in the Department of Health Evaluation Sciences at
the University of Virginia Health System in Charlottesville, Virginia.
Grant sponsor: the National Human Genome Research Institute; Grant number: R29HG01554.
*Correspondence to: Dr. Susan Miesfeldt, Division of Hematology/Oncology, University of
Virginia Health System, Box #800466, Charlottesville, VA 22908. E-mail: sm5c@virginia.edu
DOI 10.1002/ajmg.c.10012
ß 2003 Wiley-Liss, Inc.
of Pediatrics, 2001; Miesfeldt et al.,
2001], little research has been conducted
regarding the best ways to inform and
counsel children and young adults about
the possibility of inherited cancer risk, or
about parental preferences in this regard
[Strong and Marteau, 1995; Fanos, 1997;
Cohen, 1998; Hamann et al., 2000].
Despite a plethora of articles
that have addressed the issue
of genetic testing of children
for adult-onset disorders, little
research has been conducted
regarding the best ways to
inform and counsel children
and young adults about the
possibility of inherited cancer
risk, or about parental
preferences in this regard.
46
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
This is striking, given that research has
repeatedly shown that a major motivation for women to undergo BRCA1/2
testing is to help assess risks to their
children [Lerman et al., 1994, 1995a,
1996; Struewing et al., 1995; Hughes
et al., 1997; Jacobsen et al., 1997;
Tessaro et al., 1997; Loader et al.,
1998; Bluman et al., 1999; Pasacreta,
1999; Meiser et al., 2000]. The importance of education and counseling for
young people about late-onset genetic
disease risk and the need for further
research in this area has been emphasized [Strong and Marteau, 1995; Fanos,
1997; Cohen, 1998; Lerman et al., 1998;
Hamann et al., 2000; Tercyak et al.,
2000]. Furthermore, an examination of
these issues is important and timely, as
communication about inherited breast
cancer risk from parents to children is
already occurring [Hughes et al., 1999;
Tercyak et al., 2001].
We explored family issues regarding potential hereditary breast cancer
risk among women from throughout
Virginia who had been diagnosed with
breast cancer prior to age 50 years
between 1994 and 1997. Specifically,
we examined these women’s concerns
regarding their children’s risk for disease;
perceptions of their children’s concerns;
and beliefs regarding whether, at what
age, and how children should be informed about issues regarding potential
hereditary breast cancer risk.
MATERIALS AND
METHODS
Sample
This work was approved by the Institutional Review Board at the University of
Virginia Health System. The study
sample was recruited from all 71 Virginia
medical facilities reporting breast cancer
cases in women under age 50 years to the
Virginia Cancer Registry between 1994
and 1997. Because younger breast cancer
patients are at increased risk for hereditary breast cancer, the age limit of less
than 50 years at diagnosis was chosen to
ensure that a substantial proportion of
participants would be at risk for hereditary disease.
To protect the confidentiality of
potential study participants, women
were contacted for participation by the
individual hospitals where they were
diagnosed. This resulted in a two-step
sample recruitment process. Step one
involved hospital recruitment. A detailed information packet describing the
study and requesting the hospital’s participation in recruiting participants was
sent by our study coordinator to registry
representatives at the 71 eligible medical
facilities. Of these, nearly half (34)
of the hospitals agreed to assist with
recruitment. The most common reasons
cited for hospital refusal were lack of
time and lack of resources. Virginia
Cancer Registry staff then sent each
participating medical facility a list of
the names of its breast cancer cases
diagnosed at age less than 50 years and
enrolled in the registry between 1994
and 1997.
Step two involved participant recruitment. Registry personnel at each
participating medical facility sent an
informed consent and the Family History Questionnaire to all 2,959 women
with breast cancer that the facilities
had enrolled in the Virginia Cancer
Registry between 1994 and 1997.
Women were asked to send the informed consent and completed Family
History Questionnaire back to the
medical facility. Each medical facility
compiled the signed informed consent
and completed Family History Questionnaires received from the 314 women
who agreed to participate in our study
and returned these to our study coordinator. Each consenting participant was
assigned a study code that was placed
on her informed consent and the completed Family History Questionnaire
when received from the hospital. All
314 participants were subsequently mailed the Knowledge, Attitudes and Beliefs
Questionnaire.
ARTICLE
and a survey methodologist (instruments
available on request).
Family History Questionnaire
This was composed of questions to
assess whether a woman was at risk for
hereditary breast cancer. The questions
included the number(s) and type(s) of
previous cancers that the woman had
been diagnosed with, the number(s) and
type(s) of cancers in family members,
and the ages at which these diagnoses
were made.
Knowledge, Attitudes and Beliefs
Questionnaire
The 56-item Knowledge, Attitudes
and Beliefs Questionnaire asked questions related to the views of each woman
regarding breast cancer and potential inherited breast cancer risk. Question areas
included demographic information, information resources about inherited
breast cancer, concerns about children’s
breast cancer risk, health history and experience, cancer screening behaviors,
knowledge about breast cancer-associated risk factors, knowledge about inherited breast cancer, and beliefs about
breast cancer causes. The majority of
the questions were multiple-choice.
The content of the Knowledge,
Attitudes and Beliefs Questionnaire was
based on a literature review, examination
of a previous instrument (Ethical, Legal,
and Social Implications Program Psychometric Core Tools, National Human
Genome Research Institute), and the
clinical and research expertise of the
investigators. This instrument was pilottested with women undergoing treatment for breast cancer at the University
of Virginia who were not eligible for
the study. Revisions were made based
on feedback provided in one-on-one
interviews.
Data Analysis
Measures
The Family History Questionnaire and
the Knowledge, Attitudes and Beliefs
Questionnaire were developed by the
study team that included a medical
oncologist, a cancer genetic counselor,
The completed Family History Questionnaires were reviewed by a medical
oncologist and a cancer genetic counselor to separate the participants into
two categories, women with suspected
hereditary breast cancer and women
ARTICLE
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
with presumed sporadic breast cancer.
Descriptive statistics for all questions
included in the Knowledge, Attitudes
and Beliefs Questionnaire were calculated using SPSS version 9.0. Selected
study variables were compared between
women with suspected hereditary breast
and women with presumed sporadic
breast cancer using the chi-square test.
RESULTS
Response Rate
A total of 314 women from throughout
Virginia agreed to participate in the
study. Of these, 273 returned both
questionnaires for a completion rate of
87%. Data from six were not included in
the analysis because the women indicated that their breast cancers were
diagnosed in years other than between
1994 and 1997. Of the participants not
returning the Knowledge, Attitudes
and Beliefs Questionnaire, five were
deceased, one refused, four had addres-
ses deemed undeliverable by the post
office, and the remaining 31 did not
return the questionnaire for unknown
reasons.
Demographic Information
Demographic characteristics of the 267
eligible participants are summarized in
Table I. Four percent (10) of participants
reported having received cancer-specific
genetic counseling and 2% (4) of the
participants reported having undergone
DNA testing for mutations in breast
cancer-associated genes. A total of 52%
had suspected hereditary breast cancer.
Concern Among Women
Regarding Their Children’s Risk
Study participants with children
(n ¼ 231) were asked, ‘‘Have you been
concerned about your children’s breast
cancer risk because of your diagnosis
of breast cancer?’’ Eighty-one percent
(188) responded yes. Of the remaining
TABLE I. Demographic Characteristics of Participants (n ¼ 267)
Characteristic
Ethnicity
Education
Income
Marital status
Children
Category
%
n
Caucasian
African American
Other
Some high school
High school graduate
Some college
Technical graduate
College graduate
Graduate degree
<$8,000
$8,000–$19,999
$20,000–$39,999
$40,000–$59,999
$60,000–$79,999
>$80,000
Don’t know
Single
Married
Separated
Divorced
One or more
None
90
7
3
7
23
20
6
27
18
3
9
18
20
18
29
2
6
77
14
3
87
13
237
18
7
18
60
54
15
71
47
7
24
49
54
47
77
4
15
205
38
7
231
36
47
women, 16% (38) responded no, and 1%
(3) responded ‘‘I don’t know.’’
Women’s Perceptions of Children’s
Concern for Own Risk
When these same women were asked,
‘‘Have your children been concerned
about their own breast cancer risk because of your diagnosis of breast cancer?’’
the majority, 55% (127), responded yes.
Thirty-three percent (75) responded no
and 13% (29) responded ‘‘I don’t know.’’
Participants noted that both daughters
and sons had expressed concern about
their own risk for breast cancer. The
mean age at which children were reported to have first expressed concern
was 19.4 6.7 years (range, 6–38 years)
for daughters and 18.6 7.9 years
(range, 5–35 years) for sons.
Participants noted that both
daughters and sons had
expressed concern about
their own risk for breast
cancer. The mean age at
which children were reported
to have first expressed concern
was 19.4 years for daughters
and 18.6 years for sons.
Women’s Beliefs Regarding
Whether and at What Age Children
Should Be Given Information
Regarding Their Own Risk
for Breast Cancer
Women were asked, ‘‘In a family where
someone has had breast cancer, at what
age should children first be given information about their own risk for getting
breast cancer?’’ A total of 96% (257)
women responded to this question; the
remaining 4% (10) left the question
blank. Only 1% (three) women responded that they felt that children should not
be given information regarding their
own risk for disease.
48
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
Eleven percent (27) felt that the information should be provided to the
child before the age of 12 years while
60% (156) felt that it should be given to
children ages 13–18 years. Twentythree percent (59) believed that one
should wait until the child is no longer a
minor (18–21 years), and 5% (12) felt
that individuals should be older than age
21 years before learning about their own
risk for breast cancer.
Women’s Beliefs Concerning Who
Should Give Information About
Risk to Children
Women could choose more than one
response to the following question: ‘‘If
you feel that children should be given
information about their own risk for
developing breast cancer, who should
give it to them?’’ A total of 254 women
responded to this question. Of these,
84% (214) felt that the parent would be
the appropriate educator for children
about their future risk; 65% (166) chose
the child’s primary care provider. A total
of 33% (83) believed that this information should be delivered by a gynecologist, while 19% (48) felt that an
oncologist should provide the information. Twelve percent (30) selected a
genetic counselor as an individual who
should provide this information, and 3%
(7) believed that it should come from a
geneticist. Four percent (9) of participants felt that friends should supply this
information.
While the literature to date has
focused primarily on the
potential risks and negative
impact of cancer genetics testing
on minor children, the potential
benefits and positive impact
of counseling children
about inherited cancer
predisposition have been less
emphasized.
Comparison of Attitudes and
Beliefs Between Participants With
Suspected Hereditary Breast
Cancer and Participants With
Presumed Sporadic Breast Cancer
Women with suspected hereditary breast
cancer responded similarly to women
with presumed sporadic disease when
comparing answers to all questions related to the issues of breast cancer risk to
their children, as well as issues related to
educating their children about hereditary breast cancer.
DISCUSSION
The increasing capacity to predict
genetically elevated risk for adult-onset,
chronic, and life-impacting diseases has
prompted discussion and research about
genetic testing of children for a number
of disorders, including cancer. However,
there has been little research regarding
whether and how to educate and counsel
young people about potential inherited
cancer risk, and parental attitudes and
concerns about these issues. Our work
explored early-onset breast cancer survivors’ attitudes in this regard.
In this study, the vast majority of
participants with children stated that,
based on their own history of breast
cancer, they were concerned about their
children’s breast cancer risk. Furthermore, the majority of participants stated that their children had expressed
concern regarding their own risk for
developing breast cancer. Notably, participants reported concern for disease
not only among daughters, but among
sons as well. Therefore, sons may
represent a group of relatives of breast
cancer patients whose concerns about
cancer risk have been underrecognized.
The psychological impact of these
concerns and fears on children, including the effect on developmental and
maturational processes, is unclear.
While the literature to date has focused
primarily on the potential risks and
negative impact of cancer genetics testing on minor children, the potential
benefits and positive impact of counseling children about inherited cancer predisposition have been less emphasized.
ARTICLE
It is possible that education and support
may be comforting to a child with a
family history of breast cancer because
these may remove uncertainty and address misconceptions, as has been suggested for genetic testing for breast
cancer risk [Michie and Marteau, 1996;
Cohen, 1998; Eiger and Harding, 2000].
Despite a recognition of the need
for education and counseling for young
people as a preparation for genetic
testing, limited research has addressed
parental attitudes about the appropriate
age at which to inform and counsel
children about potential inherited breast
cancer risk. When asked at what age
children should be provided with information concerning their own breast
cancer risk, the majority of participants
gave a response of 18 years of age or
younger.
When asked at what age
children should be provided
with information concerning
their own breast cancer risk,
the majority of participants
gave a response of 18 years of
age or younger.
When asked who should provide
information to minors about hereditary
breast cancer risk, the answer selected
most frequently by participants was the
child’s parents. This raises concern,
because research has identified parental
misperceptions about and distortions
of genetic information, sometimes even
after the parents have obtained genetic
counseling. Early research found that
parents may discount genetic information as not applying to them specifically
or may binarize probabilities (‘‘it will
happen or it won’t happen’’) [LippmanHand and Fraser, 1979]. In the area of
breast cancer risk counseling, the emerging literature [Croyle and Lerman,
1999] suggests that women at all risk
levels perceive their breast cancer risks as
higher than predicted by objective assessment. One study also found evidence
ARTICLE
that such women binarize their risks
[Lerman et al., 1995b]. Emotional distress about the family history may also
play a role in parental risk perception and
risk communication to children [Biesecker et al., 1993; Fanos, 1997]. Therefore, while parents will necessarily play a
major role in supporting and educating
their children about risk, others will
need to play important and complementary roles in these same tasks.
Of participants choosing a health
care provider to give information to
children about breast cancer risk, most
preferred the child’s primary care practitioner. However, many primary care
clinicians have not been trained in the
area of inherited cancer predisposition
[Jones et al., 1997], and studies regarding
knowledge about genetics among primary care physicians have shown deficits
[Hofman et al., 1993]. This raises
questions about the adequacy of physicians in this role. The need for primary
care (as well as specialty) physicians to
become more knowledgeable about
genetics has been recognized [American
Society of Human Genetics, 1995;
American Society of Clinical Oncology,
1997; Collins, 1997; Jones et al., 1997;
American Academy of Family Physicians, 1999; National Coalition for
Health Professional Education in Genetics, 2001].
Only a minority of participants felt
that breast cancer risk information
should come from a genetic counselor
or geneticist. However, as almost all of
our participants had not undergone
breast cancer genetic counseling, they
were likely not familiar with the role of
genetic services for provision of inherited cancer risk information. Therefore,
their declination may have been based
on lack of familiarity with these services,
rather than on an experience-based
preference not to have their children
attend these.
Concerns about parents’ adequacy
and physicians’ limitations as information providers raise issues about how
best to address family history-positive
minors’ concerns about their breast
cancer risk. Clearly, one part of the development of breast cancer education
and counseling resources for children is
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
for primary care practitioners to develop
more expertise in genetics [American
Society of Human Genetics, 1995;
American Society of Clinical Oncology,
1997; Collins, 1997; Jones et al.,
1997; American Academy of Family
Physicians, 1999; National Coalition
for Health Professional Education in
Genetics, 2001]. In addition, genetic
Clearly, one part of the
development of breast cancer
education and counseling
resources for children is for
primary care practitioners
to develop more expertise
in genetics.
counselors may be called on to play a role
in counseling children and adolescents,
particularly when the family history is
suggestive of an inherited disorder.
However, this will require cancer
genetic counselors to develop expertise
and comfort in discussing breast cancer
risk with minors in an age-appropriate
way. The counseling of minors regarding
breast cancer risk will represent a major
challenge, given the complexities encountered in cancer risk counseling for
adults [Croyle and Lerman, 1999], who
are cognitively and psychologically more
mature than children.
The lack of differences in responses
regarding children, comparing women
with suspected hereditary breast cancer
and women with presumed sporadic
breast cancer, suggests that breast cancer
risk education will be important for
breast cancer survivors with little evidence of inherited disease, as well as for
those with suspected hereditary breast
cancer.
There are several limitations to this
work. First, the proportion of women
from the target population who agreed
to participate in the study was relatively
small. This was likely a direct result of
the two-step recruitment strategy used,
in which potential participants were
contacted by each of the 34 health
49
care facilities involved in this work
rather than by our study staff. While this
was done to protect the women’s confidentiality, it also made the recruitment process more complex and likely
resulted in a lower response rate.
However, the response rate was high
(87%) among the women who agreed
to participate in the study. Second,
although the participating hospitals
represented a cross-section of the health
care facilities statewide, the recruitment strategy used in this study likely
limited the generalizability of the data
presented. Third, the opinions of these
women are representative of a cohort of
concerned breast cancer survivors diagnosed at a young age who were recruited
from the community setting. Therefore,
our results should be extrapolated
to other breast cancer survivors with
caution.
Future research in this area should
focus on finding the best ways to inform and support children regarding
their potential inherited cancer risk.
Research should address the attitudes
of both adolescents and younger children concerning whether, at what age,
and how to inform and support them in
coping with this issue. Attention should
be given to sons as well as daughters. The
impact of this information on children is
unclear and needs further assessment,
including its influence on a child’s developmental processes.
In addition, the ability of parents to
communicate information about inherited breast cancer risk clearly and
accurately needs study. Potential attitudinal differences between mothers and
fathers regarding this issue should be
examined. Research in families with an
identified mutation should explore the
attitudes of both the transmitting and
nontransmitting parent regarding counseling, as nontransmitting parents will
also play a role in the decision about this
issue. An important underexplored area
involves the thoughts and beliefs of
clinicians about how to inform and
counsel children about the possibility
of hereditary cancer risk. Lastly, this
work needs to expand to include a
broader spectrum of inherited cancer
predisposition disorders.
50
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
ACKNOWLEDGEMENTS
The authors thank the staff of the
Virginia Cancer Registry for their assistance in accomplishing this work as well
as the hospital personnel who kindly
dedicated their time to this project.
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