This
paper was published in the American
Journal of Preventive Medicine 2003;
24(2):128-135
Research
Priorities for Evaluating Family History in the Prevention of Common Chronic
Diseases
(Print
Version)
Paula
W. Yoon ScD, MPHa,, Maren T. Scheuner MD,
MPHb and
Muin J. Khoury MD, PhDa
a Office of Genomics and Disease Prevention,
National Center for Environmental Health, Centers for Disease Control and
Prevention (Yoon, Khoury), Atlanta, Georgia, USA b GenRISK Program, Division of Medical Genetics,
Cedars-Sinai Medical Center, University of California, Los Angeles (Scheuner),
Los Angeles, California, USA
Family history is not a new concept
in medicine and public health. It is a risk factor for many chronic diseases
of public health significance, including coronary heart disease,[1]
diabetes, [2] several cancers, [3]
osteoporosis, [4] and asthma. [5] To
assess the current evidence regarding use of family history for disease
prevention, we convened a workshop in May 2002 entitled Family History for
Public Health and Preventive Medicine: Developing a Research Agenda. The
workshop brought together experts in many fields (e.g., cardiovascular
disease, cancer, diabetes, asthma, behavioral sciences, economics,
epidemiology, medical genetics, genetic counseling, preventive medicine, and
public health) to discuss the use of family medical history for identifying
persons at increased risk for certain common chronic diseases (i.e., those
that could be prevented or where early detection could result in delayed
onsets or improved health outcomes). The meeting agenda and summary are
available on the Centers for Disease Control and Prevention website (http://www.cdc.gov/genomics/).
This article summarizes the ideas discussed at the workshop regarding a
research agenda to assess the validity and utility of using family history to
prevent common chronic diseases. In addition, we describe specifications for a
family history tool that could be evaluated in different public health and
clinical settings.
Family
history for public health and preventive medicine
Although family history is a risk
factor for most chronic diseases of public health significance, it may be
underutilized in the practice of preventive medicine and public health to
assess disease risk and to influence early detection and prevention
strategies. Geneticists have long recognized that the gateway to discovering
inherited disorders and disease susceptibility is through pedigree analysis,
which includes a thorough recording of family medical history that is then
interpreted through pattern recognition.[6] In the
clinical genetics setting, the pedigree is usually constructed through a
face-to-face interview with the patient and includes at least three
generations of family members. The interview includes assessment of medical
conditions in each relative, including specific genetic disorders, birth
defects, mental retardation, age at diagnosis, current age or age of death,
questions about certain behaviors (e.g., alcohol and tobacco use), and
questions about consanguinity and ethnicity. Depending on family size, these
interviews can be lengthy, taking > 30 minutes.
In the public health and preventive
medicine setting, collection and interpretation of family history information
might have its greatest impact when focused on common chronic diseases such as
cancer and cardiovascular disease. Family history of common diseases reflects
inherited genetic susceptibilities as well as shared environment and cultural
and behavioral factors. Research, such as that described by Keku et al.[7]
in this issue, is attempting to identify the specific components of family
history, including genetic polymorphisms and environmental factors that may
contribute to disease. Until these factors are clearly defined, family history
may be useful for identifying apparently healthy people who may be at
increased risk for disease in the future.
A public health–oriented, family
history tool designed for use in diverse populations must be simple, easily
applied, and inexpensive. In developing such a tool, a balance must be
maintained between keeping it simple and gathering enough information to make
prediction possible. Collecting the appropriate information may enable
classification of people into different risk groups. For example, Scheuner et
al.[8] developed a scheme that classifies family history
risk into three groups (high, moderate, and average) for particular diseases
on the basis of the number of affected relatives and age at disease onset.
This risk stratification could be used to guide and inform prevention
activities
(Figure
1). Persons who are
average risk (i.e., the risk level of the general population) could be
encouraged to adhere to standard public health recommendations for maintaining
good health. Persons with an increased risk (i.e., those classified as being
at high and moderate risk) could be given personalized prevention
recommendations, specific to their familial risk, that might include
assessment and modification of risk factors, lifestyle changes, alternative
early detection strategies, and chemopreventive therapies (e.g., aspirin for
cardiovascular disease[9] or oral contraceptives for
ovarian cancer [10]). Persons characterized as being at
high risk might need a genetic consultation to assess a possible inherited
disorder that would include genetic counseling, education, and possible
genetic testing; such persons may also benefit from receiving recommendations
regarding screening and prevention appropriate for their risk. Risk assessment
and classification will be unique for each disease included in the family
history tool and will need to be periodically re-evaluated because family
history changes over time.
In addition to assessing individual
risk for chronic diseases, family history information could be used to assess
risk on a population basis. For example, family history questions for common
conditions (e.g., cancer, heart disease, and diabetes) could be incorporated
into population-based studies (e.g., the Behavioral Risk Factor Surveillance
Survey,[11] the National Health Interview Survey, [12]
and the National Health and Nutrition Examination Survey [13]).
Data routinely collected in these surveys on certain conditions and behaviors
(e.g., obesity, blood pressure, exercise, diet, smoking, and alcohol use)
could then be stratified by family history risk. Currently, these risk factors
are examined by race, gender, age, income, and educational level; family
history would add another dimension that may help identify population-based
targets for health promotion messages or interventions.
We used an evaluation framework to
structure the workshop presentations and to help identify gaps in knowledge
about the validity and utility of family history information for disease
prevention. The framework was based on recommendations made by the Secretary's
Advisory Committee on Genetic Testing for assessing the benefits and risks of
genetic tests.[14] This
framework, originally developed for the evaluation of predictive genetic
tests, was used because it could easily be applied to the use of family
history for determining risk of future disease.Table
1 defines the four elements of the evaluation framework: (1) analytic
validity;(2) clinical validity; (3) clinical utility; and (4) the ethical,
legal, and social implications of testing or screening. A more detailed
discussion about the use of the framework for evaluating family history can be
found in Yoon et al.[15]
To be practical, a family history
tool that will be used in public health settings by a substantial number of
people from various populations can cover only a limited number of diseases.
Part of the research agenda will be determining which diseases should be
included. Workshop participants suggested several criteria that could be used
to select these diseases (Table
2).
The criteria reflect public health objectives and priorities as well as the
ability to obtain valid information. The diseases included in the tool should
be associated with substantial public health burden, which is usually assessed
in terms of prevalence, morbidity, mortality, associated disability, and
healthcare costs.[16] The diseases should have
well-defined case definitions and should be those of which relatives are
likely to be aware. These factors will affect how accurately a person can
report the disease status of their relatives and the ability of the tool to
predict disease risk. Family history should be an established risk factor for
the disease, and effective interventions should be available for primary and
secondary disease prevention.
The workshop focused on coronary
heart disease, type 2 diabetes, asthma, and colorectal cancer as examples of
potential candidates for inclusion in a family history tool. The articles in
this theme issue are based on presentations made at the workshop. Kardia et
al.[1] have summarized the literature and found that
family history is a significant predictor of risk for coronary heart disease (CHD)
even after adjusting for traditional risk factors (e.g., hypertension,
smoking, and abnormal lipoprotein levels). Validation studies demonstrate that
CHD can be accurately reported by family members, [17]
and practice guidelines for preventing or managing early CHD have been
established. [18] Using the criteria suggested by the
workshop participants, CHD is a good candidate for inclusion in a family
history–screening tool.
Type 2 diabetes is another
potential candidate with several well-established risk factors, including age,
race, ethnicity, obesity, and lack of exercise. Because of the alarming
increase in the latter two risk factors in the U.S. population, diabetes is
reaching epidemic proportions.[19 and 20]
Harrison et al. [2] found that family history risk
estimates for type 2 diabetes varied from a 1.4- to 6.1-fold increase in risk,
depending on the study design and case definition. Some of the discrepancies
in familial risk estimates might result from misclassification because some
studies included both type 1 and type 2 diabetes among cases. Because many
diabetes cases are undiagnosed, [21] persons may be
unaware of diabetes in their family, resulting in an underestimate of disease
occurrence. However, despite this lack of specificity, identification of a
familial risk for diabetes is likely to be of benefit because persons who are
at risk can prevent the condition through both lifestyle and medical therapy.
[22, 23 and 24]
Because most type 2 diabetes results from insulin resistance, [25
and 26] ascertaining family history information for other
conditions associated with insulin resistance (e.g., cardiovascular disease,
hypertension, and lipid abnormalities) may improve familial risk
stratification for diabetes. [27, 28
and 29]
Asthma is another candidate disease
for which difficulties with the case definition may affect the validity of
family history information. Several studies suggest that family history is a
useful tool to identify increased risk of asthma; however, the degree of risk
is uncertain.[5] The case definitions for asthma in the
studies varied and included parental reporting of wheezing, current wheeze or
cough, physician-diagnosed asthma, and recent use of asthma medications.
Although asthma is a public health priority with rising prevalence and
associated morbidity, the usefulness of family history for primary prevention
and for identifying risk for severe diseases is not clear. More data are
needed to assess the clinical validity and utility of risk stratification
based on family history for asthma prevention.
Several cancers might be good
candidates for inclusion in a family history tool. Results from a validation
study of the accuracy of a proband's report of cancer among their relatives
demonstrate a high degree of accuracy for breast, ovarian, colorectal and
prostate cancers.[3] However, other cancers of the female
pelvic organs (e.g., cervical and endometrial) had lower accuracy. [3]
Studies have also indicated that rare cancers (e.g., osteosarcomas) and
cancers in organs not easily distinguished from neighboring organs are usually
not reported with a high degree of accuracy. [30] In
addition, rare cancers may not meet the criteria for diseases of public health
importance. Melanoma would seem like a good candidate based on rising
prevalence rates, a strong familial component, and preventability, but when
reported, melanoma is often confused with basal and squamous cell carcinomas.
[31] However, distinguishing between types of skin cancer
may not be necessary in a family history tool. If a person has a family
history of skin cancer, regardless of type, the recommended interventions may
be the same depending on the level of familial risk.
Several other diseases have been
discussed as candidates for inclusion in a family history tool (e.g.,
osteoporosis, arthritis, schizophrenia, depression, Alzheimer's disease,
psoriasis, inflammatory bowel disease, and alcoholism). For these disorders, a
sufficient number of eligibility criteria, as specified by the workshop
participants, were not met due to a lack of evidence regarding the validity
and utility of using family history for early detection or for improving
prevention efforts. However, all of these conditions with a strong familial
component and of public health concern warrant further consideration and
evaluation.
The workshop participants also
discussed whether the collection of risk-factor data should be included in a
family history tool. These factors might include tobacco and alcohol use, body
mass index, exercise, and diet. Risk factor information could be used in
combination with family history to classify people into risk groups. In a
study of pancreatic cancer, the relative risk associated with having a
first-degree family member with pancreatic cancer diagnosed before age 60 was
2.49 (95% confidence interval [CI], 1.32–4.69). However, when family history
was combined with ever having smoked, the relative risk increased to 8.23 (95%
CI, 2.18–31.07).[32] Although questions about risk
factors to a family history tool might elicit useful information, it would add
to the length and complexity of the instrument since obtaining valid
information regarding diet, alcohol, and tobacco use would be difficult in
only a few brief questions.
Examples of several family-history
collection instruments were presented at the workshop, and the participants
discussed the attributes that should be considered for a public
health–oriented tool. Although the multigeneration pedigree is considered
ideal because it captures large amounts of information, it requires training and
skill to create, is time consuming, and is of questionable usefulness as a
population-based screening tool. Ideally, a public health–based family history
tool should be easy to administer and adaptable for use in many different
settings.
A
core set of questions should be developed and evaluated using different formats
and among different population groups. The tool could be a self-administered
paper questionnaire or computer based. Self-administered, computer-based
questionnaires could include an algorithm in the software that would interpret
the data and provide both a brief synopsis of disease risk and recommendations
for clinical follow-up. Questionnaires could be completed in association with
visits to healthcare providers, in specific settings (e.g., clinics, schools,
and drugstores), or at home. Patients and their providers could discuss the
implications of the family history information and keep it updated during annual
visits. Questionnaires completed at home have the advantage of allowing people
to confer with relatives or review family records, potentially improving the
reporting accuracy. Electronic tools have an added advantage in that they can be
easily stored, retrieved, and updated. In addition, Internet-based tools could
be linked with useful websites that provide further information about disease
prevention and health promotion.
Once
a prototype family history tool has been developed, the analytic validity
of the instrument should be assessed in different settings. Analytic
validity, as described by sensitivity and specificity measurements, is
usually estimated by comparing the information obtained by the screening
tool with a "gold standard" that is assumed to yield more valid
information (e.g., interviews with relatives or review of medical records,
death certificates, disease registry records, and pathology reports). When
well designed, validation studies are resource intensive, which may
explain why most of the published studies use only one gold standard for
comparison.
Several
studies have been conducted to validate reporting of CHD events by family
members.[1] In one study, a family history
questionnaire administered to high school students was compared with
reports from the students' relatives. The questionnaire was found to be
79% sensitive and 91% specific. [33] Reporting of CHD
has been validated in several studies, with most concluding that reporting
is reasonably accurate. [1 and 34]
A limited but growing body of literature is available from both
population-based and clinical settings regarding the assessment of
sensitivity for reporting cancer family history. [3
and 35] Less is known about the validity of reporting
diabetes, asthma, mental illness, and other diseases of public health
importance.
The
workshop participants outlined the issues that could form the basis of a
research agenda for evaluating the validity and utility of family history
tools. These issues are formulated as questions in
Table
3. The questions were adapted from a model process developed by the
Foundation for Blood Research for evaluating genetic tests.[36]
Some of these questions may be answered by data from existing studies,
whereas others may require the funding and implementation of new studies.
Because the purpose of a public health–oriented family history tool is
to predict future disease, data collected from healthy persons must be
validated. Most of the data in the literature are derived from
registry-based or case–control studies. Case patients may recall disease
among relatives more accurately than controls, [37]
although some models indicate that the impact of differential
misclassification is likely minimal. [38] Disease
status is not the only characteristic of the proband that may affect the
validity of reporting. Age, gender, race/ethnicity, and socioeconomic
status were also considered by the workshop participants to be factors
that should be evaluated.
At
the workshop, data from an analysis of family history reporting that was
collected in the Healthstyles[39] 2001 survey were
presented. Participants in this nationwide, population-based survey were
asked if their biological mother, father, or siblings ever had asthma or
heart disease. Of the 3719 respondents, 15% could not provide a complete
family history. Incomplete reporting was significantly associated with
older age, black and Hispanic race/ethnicity, low income, and lack of
health insurance. [40] Understanding the factors that
contribute to the completeness and accuracy of reported family history
will aid in the design of appropriate methods for collecting valid
information for disease prevention efforts.
The
ultimate goal of a family history tool is to identify risk for disease
among apparently healthy persons so that recommendations can be made for
ways to prevent future disease. If a tool is not useful for prediction or
intervention, even a highly analytically valid tool will be of limited
value. Despite a renewed interest in using family history as a screening
tool,[41, 42 and 43]
many questions need to be answered to assess the validity and utility of
the approach (Table
3).
Assessment
of clinical validity should begin with estimates of the relative and
attributable risks associated with family history for each disease and for
each strata of the family history classification scheme. Some of this data
may already exist from case–control or large cohort studies. However,
for most health conditions, additional research is necessary to determine
the core components of the family history that influence disease
risk.
Several
studies suggest that collecting data on first-degree relatives only (i.e.,
parents, siblings, and offspring) may be sufficient in determining disease
risk[1 and 3]; the usefulness of
collecting information regarding more distant relatives (e.g.,
grandparents, aunts, and uncles) remains unclear. The age of the index
case is a variable that must be considered when deciding whether to
include medical history from more distant relatives. Because the
conditions of concern have a late onset, limiting family history
information to only first-degree relatives might underestimate the
familial risk; the disease might only be present in older aunts, uncles,
and grandparents. Furthermore, for conditions limited to one gender (e.g.,
prostate, most breast cancer, and ovarian cancer), information regarding
second-degree relatives is often crucial for defining a familial
risk.
Another
important consideration is age at disease onset. Most of the family
history risk classification systems and family risk scores use age at
onset for estimating risk.[8]
Earlier-than-expected age at onset for common chronic disease is
associated with increased family history risk compared with diseases
occurring late in life, [44] although family history
of most common chronic conditions at any age at onset can increase the
risk. The definition of early age at onset, however, varies by
disease and gender. For example, premature coronary artery disease onset
has been defined as <55 years in males and <65 years
in females.[8] Early onset for type2
diabetes, stroke, and most common cancers is defined as <50
years regardless of gender. The algorithms that are developed to classify
or score family history risk must account for different early onset
definitions for different diseases. In addition, because risk assessment
based on family history changes over time, recommendations should be made
as to how often the information should be updated.
Family
size is another factor that can affect risk assessment and prediction.
Some of the methods used to estimate family risk scores account for the
family size by comparing the observed and expected number of relatives
with a particular disease.[45 and 46]
When families are small, disease-specific information from which to
predict future disease is limited. A study of methods for calculating
family risk scores demonstrated that if the number of family members is
minimal and affected relatives are few, categorical definitions or simple
counts are likely to be adequate for estimating risk. [46]
The
predictive value of family history depends on sensitivity and specificity,
as well as the prevalence of the disease in the population. If the
prevalence of a disease is low, even a highly valid tool will yield a low
predictive value. Testing of the family history tool should be undertaken
in different population groups because the disease prevalence may vary.
Studying the risk factors that modify the relationship between family
history risk and disease occurrence (e.g., genetic, environmental, and
behavioral) is also necessary. These should be considered when making
recommendations to people on the basis of their family history risk
because they may positively or negatively impact the effectiveness of the
interventions. Incorporating family history questions into
population-based risk factor surveys may help identify some of these
factors.
The
clinical utility assessment of family history will involve behavioral
research, health services research, cost–benefit analysis, and
evaluation research. Table
3 lists questions that need to be answered for each of these areas. The
articles from the family history workshop in this theme issue describe in
more detail some of the disease-specific research that is needed. Of note
is the article by Bowen et al. [47] in this issue
that includes a case study in which a complex range of issues are raised
by the use of family history to predict a 40-year-old woman's risk of
colorectal cancer. These issues include healthcare access and insurance,
the use of family history by primary care providers, risk perception,
awareness of disease status among relatives, and adherence to prevention
guidelines.
Risk
perception and its impact on disease prevention were discussed at length
during the workshop. Specifically, findings from research that focused on
awareness of family history of breast cancer and its affect on behavior
change were presented.[48] Despite the abundant media
attention that breast cancer has received, studies have found that many
women with a family history of breast cancer may not realize that their
risk is elevated. [48] A recent study among men with
a family history of prostate cancer demonstrated that 38% did not know
that they were at increased risk because of family history. [49]
Risk
perception is a very complex cognitive process influenced by many factors
and life experiences that are unique to individuals. One of the greatest
challenges of preventive medicine is conveying the notion of risk so that
people can make informed decisions about their health behaviors. Family
history assessment involves not only identifying persons who are at
increased risk for disease, but also educating them about what that risk
means. A meta-analysis of 19 breast cancer studies found that perceptions
of elevated risk were positively associated with breast cancer screening.[50]
Women were also more likely to be screened if they had a family history of
breast cancer. A recent study of colorectal cancer found that a strong
family history of cancer was associated with better adherence to
sigmoidoscopy recommendations. [51]
Although
the literature has demonstrated that a positive association exists between
family history and screening behavior, data are limited regarding the
impact of family history on lifestyle changes (e.g., diet, exercise, and
smoking cessation). One recent study demonstrated that the occurrence of a
heart attack or stroke in an immediate family member did not lead to a
change in modifiable risk factors in young adults.[52]
However, these individuals were not informed of their familial risk, and
there was no assessment of their beliefs, attitudes, and perceptions of
risk for heart disease or stroke. An intervention that provided counseling
and education, risk assessment, and recommendations for prevention might
have been successful in changing behaviors in this group. Research is
needed to demonstrate the effectiveness of this type of intervention in
changing behaviors and preventing disease in individuals with familial
risk. This might include clinical trials as well as decision analyses. For
example, in this theme issue, Tyagi and Morris [53]
used a decision analytic framework to explore the value of family history
of colorectal cancer for promoting awareness of increased risk and
participation in screening. In another article in this issue, Hunt et al.
[54] have shown that using family history of
cardiovascular disease to target education efforts is efficient and
relatively inexpensive because most cardiovascular disease events,
especially those that occur at an early age, are concentrated in a limited
number of families.
Research
to Assess Ethical, Legal, and Social Issues
Public health professionals should
also be aware of the ethical, legal, and social implications of collecting
family history information, particularly in the current climate of uncertainty
about the privacy of medical information. A number of legal issues can affect
the collection of family history information under some circumstances, including
informed consent, ownership of the data, obligation to disclose, and reporting
requirements. At least two lawsuits have been filed against physicians who did
not notify a person of their increased risk for a disease based on a family
history.[55] Legal issues related to the use of family
history information will vary considerably by setting (i.e., clinical practice
vs public health campaign). In addition, the potential negative outcomes of
assessing family history must be considered carefully. For example, limited
information has been obtained about stigmatization; discrimination;
privacy/confidentiality; and personal, family, and social issues associated with
family history assessment and risk labeling. Although most public health
professionals are aware of the potential for fatalism, anxiety, impairment of
self-image, depression, or blame associated with collecting family history
information, no data are available to suggest that these unintended behaviors or
feelings do in fact occur, or, if they do, how commonly they occur. This is
another aspect of obtaining family histories that will require further
research.
In
summary, a family history tool for public health and preventive medicine should
be (1) simple, easily applied, and inexpensive; (2) capable of
identifyingpersons at high and moderate risk for disease; and(3) useful for
targeting interventions and positively influencing healthy behaviors, without
undue cost or harm. If the research priorities presented herein are
satisfactorily addressed, physicians hopefully will routinely ascertain family
history information for identifying disease risk and then recommend personalized
prevention strategies for their patients. In addition, the establishment of a
public health campaign could influence the general public through associated
public health messages (e.g., "Know your family history: It might save your
life"). The campaign should not detract from current public health messages
for achieving a healthy lifestyle. Rather, using family history to find people
at moderate or high risk for common chronic diseases may augment current efforts
to motivate people to exercise, eat a healthy diet, stop smoking or never start,
and participate in screening and prevention programs.
We
gratefully acknowledge Dr. Robert Fletcher who as a guest editor
contributed to the timeliness and quality of the articles in this special
theme issue on family history.
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Corresponding
author. Address correspondence and reprint requests to: Paula W. Yoon, MD,
Office of Genomics and Disease Prevention, CDC/NCEH, 4770 Buford Highway,
MS K-89, , Atlanta GA 30341-3724, USA.