Health Beliefs and Behaviors of Women Who Have Received Genetic Counseling For Breast Cancer

There are both genetic and behavioral risk factors for breast cancer, but the interaction between these factors is not clear. Little is known about the impact of receiving genetic risk information for breast cancer on behaviors such as diet and physical activity. Seven focus groups were conducted with 23 women who had recently received genetic counseling for breast cancer, in order to explore health beliefs and behaviors following genetic counseling. Findings revealed that there was much confusion and uncertainty about the associations between health behaviors and breast cancer risk, and participants reported that receiving genetic counseling had little impact on health protective behaviors. Further research is required to understand variation in response to genetic risk information, and to assess the impact of providing additional information regarding lifestyle factors.     

How Do Geneticists and Genetic Counselors Counsel Women from High-Risk Breast Cancer Families?

This qualitative study asked Australian Genetic Counselors and Clinical Geneticists working in cancer genetics to describe their practice when a woman attends a consultation about her family history and her risk of developing breast cancer. Twenty-nine out of 36 Clinical Geneticists/Genetic Counselors returned the questionnaire (82%). Participants identified the key goals of the consultation as (a) identifying the individual needs and concerns of the woman, (b) providing information on genes and chromosomes, (c) giving an individual risk assessment in the context of supportive interaction, and (d) discussing the pros and cons of genetic testing and putting a surveillance plan into place. Respondents emphasized the dual importance of counseling/support and information provision in this setting, suggesting that one could not be given without the other. Implications for clinical practice are discussed.     

The Decision to Test in Women Receiving Genetic Counseling for BRCA1 and BRCA2 Mutations

Functions of genetic counseling include provision of risk information and provision of support in an effort to assist with decision making. This study examines (1) the relationship among intentions to test, self-reported provision of blood sample, and receipt of test results; (2) the impact of genetic counseling on distress specific to gene status, perceived risk of developing breast and ovarian cancer in the context having BRCA1/2 mutations (mutations predisposing to increased risk of breast-ovarian cancer), and perceived risk factors for breast cancer; and (3) the clinical profile of those receiving/not receiving results. Intentions to test for BRCA1/2 mutations, self-reported provision of blood sample immediately after counseling, and receipt of test results were statistically different but highly correlated, and intentions to test increased from pre- to postcounseling. A repeated measures ANOVA found distress specific to gene status and perceived risk factors decreased from pre- to postcounseling. Further, two clinical profiles of consultands emerged: (1) those receiving results with change in intentions to test having lower levels of distress and (2) those not receiving results and those receiving results with no change in intentions to test with higher levels of distress. Our findings are consistent with the function of genetic counseling-to provide information and support to those with familial cancer, as well as to assist in decision making. The provision of support is important as distress specific to gene status may impede flexible decision making about genetic testing.     

Health Behaviors of Childhood Cancer Survivors: What We’ve Learned

There has been a dramatic increase in the number of childhood cancer survivors due to improved cancer treatments. However, these survivors are at risk for numerous late-effects as a result of their cancer therapy. Engaging in health-protective behaviors and limiting risky health behaviors are vitally important for survivors given their increased risks and physical late-effects. For this paper, we systematically reviewed the literature on childhood cancer survivors’ health behaviors by searching for published data and conference proceedings using computerized databases and references, and summarized these results. We examined the literature describing the prevalence of a variety of health behaviors among survivors, identifying significant covariates, and describing health behavior interventions. Finally, we provided research recommendations and discussed an ongoing study designed to address some of the limitations in the existing literature. The research to date is limited and recommendations for future studies are outlined.     

Knowledge, Attitudes, and Beliefs of Arab-American Women Regarding Inherited Cancer Risk

The increasing incidence of breast cancer in the Arab world, coupled with a relatively early age of onset, raises concern for the presence of hereditary risk factors in this population. However, due to potential structural and cultural barriers, Arab Americans make up the smallest percentage of individuals tested for Hereditary Breast and Ovarian Cancer Syndrome in the United States. The objectives of this qualitative pilot focus group of 13 Arab-American women were to explore attitudes, knowledge and beliefs regarding hereditary breast cancer in the Arab-American community in metropolitan Detroit, identify barriers that would prevent women from seeking hereditary cancer screening/testing and determine who women would talk to about inherited cancer. Results indicated that cultural beliefs and personal experiences with cancer influenced the women’s perspectives on hereditary cancer risk. A high level of secrecy about cancer within Arab-American families was present, which may prevent accurate risk assessment and referral for genetic services. Other identified barriers that may influence hereditary risk assessment included stigma, fears and misconceptions of cancer. While these barriers were present, participants also expressed a strong need for education and tailored cancer risk information for their community.     

Genetic Risk,Perceived Risk,and Cancer Worry in Daughters of Breast Cancer Patients

This study explored relationships between worry, perceived risk for breast cancer, consulting a genetic counselor, having genetic testing, and genetic risk for women whose mothers had breast cancer. Analyses involved data from a community-based phone survey of women whose mothers had breast cancer. Participants were categorized as having low, intermediate, or high genetic risk based on their reported family history, in accordance with an accepted classification scheme. The Lerman Breast Cancer Worry Scale measured worry, and participants reported their perceived lifetime likelihood of breast cancer, risk compared to others, and chance from 1 to 100. ANOVA, chi-square, and multiple regression analyses were conducted as appropriate. One hundred-fifty women participated. Mean age was 38 years, and 81% were Caucasian. Fifty-two women had low, 74 had intermediate, and 24 had high genetic risk for breast cancer. There were no significant differences in worry or perceived risk by hereditary risk category. Most high-risk women (91%) had not spoken with a genetic counselor, and no one had previous genetic testing. These findings suggest perceived risk, worry about breast cancer, and use of expert consultation do not match the genetic contribution to risk. There is a need for effectively stratifying and communicating risk in the community and providing tailored reassurance or referral for high-risk assessment.     

Psychological Factors Associated with Emotional Responses to Receiving Genetic Risk Information

This study identified levels of distress, and predictors of levels of distress, in women undergoing assessment for genetic risk of breast/ovarian cancer based on their family history. It comprised a cohort study following 154 women who completed questionnaires at entry into a cancer genetic assessment programme and following risk provision. Independent significant associates of anxiety following risk provision were age, neuroticism, feeling hopeless about developing cancer, a perceived lack of control over developing cancer, lack of a social confidant, and a coping response involving acceptance/resignation. Depression was associated with age, neuroticism, feeling hopeless about developing cancer, lack of social confidant, and a coping response involving acceptance/resignation. To avoid high levels of psychological morbidity in future cohorts undergoing cancer genetic risk assessment, information should be given that emphasises that some degree of control over health outcomes through behaviour change or increased surveillance is possible.     

The Use of a Family History Risk Assessment Tool within a Community Health Care System: Views of Primary Care Providers

Primary care providers (PCPs) offered input regarding the incorporation of a family health history (FHH) risk assessment tool into a community health care system (CHCS). Sixteen PCPs participated in one of three focus groups. Perceived impediments included the lack of standard screening guidelines, effective screening tests, genetic counseling resources, and services for high-risk patients. The PCPs were concerned about their level of expertise, the cost of preventive health care, and genetic discrimination. They also were concerned about the use of a FHH tool by oncologists within the CHCS because of communication gaps between oncologists and PCPs, lack of clarity regarding follow-up and legal liability, and reimbursement issues. To integrate a FHH tool into a CHCS, PCPs will need consultation and referral services, evidence-based recommendations, and "just-in-time" educational resources. Oncologists who use the tool will need to develop a streamlined communication system with PCPs, establish clearly defined roles, and ensure patient follow-up.     

Addressing women's breast cancer risk and perceptions of control in medical settings

Many women with family histories of breast cancer deal with two distinct but related issues: their objective physical risk and the emotions this risk engenders. Studies indicate that approximately 70% of African American and white women are concerned about their chances of developing breast cancer someday and perceive themselves to be at risk. Health care providers, including psychologists, need to be aware of the special needs and psychosocial concerns of high-risk women with family histories of breast cancer, since perceptions of breast cancer risk influence screening practices. Providers need training in understanding the significance of specific family patterns of breast cancer, screening guidelines appropriate for women at risk, and the benefits and risks of available prevention options, including genetic screening. Delivering accurate information about both established risk factors known to elevate personal risk, such as age and family history, and factors which women associate with breast cancer, such as bumping and bruising a breast, smoking, and oral contraceptive use, is essential for promoting accurate risk perceptions and appropriate screening schedules.     

Factors Influencing Perceptions of Breast Cancer Genetic Counseling among Women in an Urban Health Care System

The study assessed perceptions of breast cancer genetic counseling. Focus groups were conducted with twenty women (ages < = 50 years) in a Midwestern, urban health system identified as at above average risk of developing hereditary breast cancer and referred for breast cancer genetic counseling following mammography. All participants associated the words “breast cancer” with fear. African American women who received breast cancer genetic counseling may have channeled their fear into increased vigilance related to breast health. African American women who did not receive breast cancer genetic counseling were most knowledgeable about it. In contrast, Caucasian women who did not receive it reported uncertainty about the role of genetic counseling and testing in assessing breast cancer risk, mistrust in medical professionals, and lack of trust in the accuracy of genetic tests. The results could be used to help develop interventions to improve informed decision-making regarding breast cancer genetic counseling.     

Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter

Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services are underutilized by atrisk patients. This study aimed to: (1) determine the rate of genetic counseling utilization following a referral letter, (2) characterize factors (barriers and supports) which influenced uptake of services, and (3) identify potential strategies for increasing utilization. This study evaluated the uptake of cancer genetic counseling among 603 screening mammography patients identified as having an increased risk for HBOC based on National Comprehensive Cancer Network (NCCN) guidelines. At risk individuals and their primary care providers were mailed a referral letter recommending genetic counseling. Three focus groups (N = 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services.     

Women’s Perceptions of the Personal and Family Impact of Genetic Cancer Risk Assessment: Focus Group Findings

Women with a personal or family history of breast or ovarian cancer are increasingly presenting for genetic cancer risk assessment (GCRA). To explore the personal and family impact of GCRA, four focus groups were conducted of women seen for risk assessment. Participants were 22 primarily non-Latina White women with a personal or family history of breast or ovarian cancer. Analysis of the data identified new themes related to balancing time to assimilate risk information with the need to make timely healthcare decisions, physicians’ lack of sufficient genetic knowledge, and concern for daughters regardless of the daughters’ age. Other themes related to protecting others, knowledge as empowerment, reassessing personal attribution of cancer risk, managing uncertainty, reappraising body image, and experiencing divergent family responses to communication of cancer risk and healthcare decisions. Understanding the personal and family impact of GCRA may enable genetics professionals to tailor their counseling efforts to better meet the needs of these women. Additional research is needed to extend these findings and identify interventions to support positive outcomes of GCRA.     

Breast Cancer Risk Perceptions among Relatives of Women with Uninformative Negative <Emphasis Type="Italic">BRCA1/2</Emphasis> Test Results: The Moderating Effect of the Amount of Shared Information

The most common result of BRCA1/2 mutation testing when performed in a family without a previously identified mutation is an uninformative negative test result. Women in these families may have an increased risk for breast cancer because of mutations in non-BRCA breast cancer predisposition genes, including moderate- or low-risk genes, or shared environmental factors. Genetic counselors often encourage counselees to share information with family members, however it is unclear how much information counselees share and the impact that shared information may have on accuracy of risk perception in family members. We evaluated 85 sisters and daughters of women who received uninformative negative BRCA1/2 results. We measured accuracy of risk perception using a latent variable model where accuracy was represented as the correlation between perceived risk (indicators = verbal and quantitative measures) and calculated risk (indicators = Claus and BRCAPRO). Participants who reported more information was shared with them by their sister or mother about her genetic counseling session had greater accuracy of risk perception (0.707, p?=?0.000) than those who reported little information was shared (0.326, p?=?0.003). However, counselees shared very little information; nearly 20 % of family members reported their sister or mother shared nothing with them about her genetic counseling. Family members were generally not aware of the existence of a genetic counseling summary letter. Our findings underscore the need for effective strategies that facilitate counselees to share information about their genetic counseling sessions. Such communication may help their relatives better understand their cancer risks and enhance risk appropriate cancer prevention.     

The Impact of Breast Cancer Genetic Risk Assessment on Intentions to Perform Cancer Surveillance Behaviors

One hundred and fifty-four women undergoing breast/ovarian cancer genetic risk assessment completed questionnaires at entry into the Cancer Genetic Service for Wales (CGSW) assessment program and following risk provision, mapping the strength of intentions to engage in a number of preventive/surveillance behaviors, including seeing specialists, breast self-examination, and involvement in screening programs, including mammography. A number of potential predictors of intentions were also assessed, including participants' mood and emotional response to receiving risk information, the perceived benefits (in terms of reassurance and early disease detection) of engaging in each preventive behavior, and the perceived desires of their family and General Practitioner. Intentions to self-examine did not change following risk provision, although strength of intentions to engage in some other preventive behaviors did lessen. Family and General Practitioners appeared to be strong social influences on behavioral intentions, as were the perceived benefits of gaining reassurance and/or early detection of disease.     

Interventions to prevent skin cancer: Experimental evaluation of informational and fear appeals

Abstract

Reports experimental and correlational analyses of intentional sunbathing in 82 female and 54 male suntanned adults at high-risk of skin cancer. Random assignment to high or low information conditions allowed evaluation of a widely-distributed American Cancer Society pamphlet. A crossed manipulation assigned subjects to a cancer fear/no fear condition. Personality variables served as correlational predictors of sunbathing attitudes, intentions, and information-seeking behaviors; skin cancer knowledge served as both a predictor and a dependent variable. Skin cancer knowledge, but not fear, emerged as a significant predictor of attitudes, intentions, and behaviors; and simple provision of information affected relevant knowledge. Contrary to the limits often encountered with health behaviors, specific cancer education appears to be somewhat effective in this domain, though indirectly. High risk-taking personalities were less likely to have or seek relevant information, suggesting the need to take into account individual predispositions and routes of knowledge acquisition when designing interventions.     

Pediatric Predispositional Genetic Risk Communication: Potential Utility for Prevention and Control of Melanoma Risk as an Exemplar

Predispositional genetic testing among minor children is intensely debated due to the potential benefits and harms of providing this type of genetic information to children and their families. Existing guidelines on pediatric genetic testing state that predispositional testing could be appropriate for minors if preventive services exist that mitigate children’s risk for or severity of the health condition in question. We use the example of hereditary melanoma to illustrate the rationale for and potential application of genetic risk communication for an adult-onset cancer to a pediatric population where childhood behaviors may reduce risk of disease later in life. We draw from the adult melanoma genetic risk communication and pediatric health behavior change literatures to suggest ways in which genetic test reporting and complementary education could be delivered to children who carry a hereditary risk for melanoma and their families in order to foster children’s engagement in melanoma preventive behaviors. Genetic discoveries will continue to yield new opportunities to provide predispositional genetic risk information to unaffected individuals, including children, and could be delivered within programs that provide personalized and translational approaches to cancer prevention.     

Talking about sex after cancer: A discourse analytic study of health care professional accounts of sexual communication with patients

There is consistent evidence that health care professionals (hcps) are not addressing the sexual information and support needs of people with cancer. Thirty-eight Australian hcps across a range of professions working in cancer care were interviewed, to examine constructions of sexuality post-cancer, the subject positions adopted in relation to sexual communication, and the ways in which discourses and subject positions shape information provision and communication about sexuality. Participants constructed sexual changes post-cancer in physical, psychological and relational terms, and positioned such changes as having the potential to significantly impact on patient and partner well-being. This was associated with widespread adoption of a discourse of psychosocial support, which legitimated discussion of sexual changes within a clinical consultation, to alleviate distress, dispel myths and facilitate renegotiation of sexual practices. However, this did not necessarily translate into patient-centred practice outcomes, with the majority of participants positioning personal, patient-centred and situational factors as barriers to the discussion of sex within many clinical consultations. This included: absence of knowledge, confidence and comfort; positioning sex as irrelevant or inappropriate for some people; and limitations of the clinical context. In contrast, those who did routinely discuss sexuality adopted a subject position of agency, responsibility and confidence.     

Reducing the Risk for Preschool Expulsion: Mental Health Consultation for Young Children with Challenging Behaviors

Increasing numbers of young children are being expelled from child care settings because of their problem behavior. Access to mental health consultation is related to lower rates of expulsion, but additional data are needed to document the pathways through which mental health consultation reduces the risk of expulsion. We report on outcomes from a 4-year project designed to reduce the number of children expelled for problem behavior in a large suburban county in Maryland. Two master’s-level professionals provided behavioral consultation to child care providers who identified nearly 200 children at imminent risk for expulsion. Child care providers rated children’s social skills and problem behaviors at referral and discharge using the Preschool Kindergarten Behavior Scales and the Brief Infant Toddler Social Emotional Assessment. Statistically significant increases in social skills and reductions in problem behaviors were seen for children who received individualized consultation. More than three-quarters of the children who were at risk for expulsion were able to be maintained in their current child care placement; of those that changed placements, only half (n = 13) were removed involuntarily. These findings provide additional support for mental health consultation as a promising strategy to reduce the risk for expulsion for young children with problem behaviors.     

Participation in Breast Cancer Genetic Counseling: The Influence of Educational Level, Ethnic Background, and Risk Perception

Genetic counseling has been suggested as a means of providing information and support to women with a family history of breast cancer. Yet women who undergo cancer genetic counseling in the United States generally consist of only a subset of those at risk, namely well-educated, upper-middle class, European American and Jewish women. We report outcomes from a study that provided a unique opportunity to determine whether women of African American, European American, Native American, or Ashkenazi Jewish ancestry have varying interest in having cancer genetic counseling. The study offered a genetic counseling session to 97 women with a family history of breast cancer who were participating in a larger interview study designed to assess attitudes toward genetic testing for breast cancer. The study offered genetic counseling free of charge to all study participants with a family history of breast cancer, removing the potential barriers of cost, the need for a physician referral, and lack of awareness of genetic counseling. Fifty women out of the 97 women offered genetic counseling (52%) accepted the offer by completing a session. Those who accepted genetic counseling had a higher educational level, a higher perceived risk of breast cancer, and were more likely to expect a positive BRCA1 or BRCA2 genetic test if they were to undergo genetic testing. When controlling for education level, there was no correlation between the participants' ethnic background and acceptance of a genetic counseling session. Outreach efforts to minority populations may increase awareness of the availability of genetic counseling and may facilitate participation by such populations.