Components of family history associated with women's disease perceptions for cancer: A report from the Family Healthware™ Impact Trial

PurposeTo determine the specific components of family history and personal characteristics related to disease perceptions about breast, colon, and ovarian cancers.MethodsBaseline, cross-sectional data on 2,505 healthy women aged 35–65 years enrolled from 41 primary care practices in the cluster-randomized Family Healthware™ Impact Trial, assessed for detailed family history and perceived risk, perceived severity, worry, and perceived control over getting six common diseases including breast, colon, and ovarian cancers.ResultsParticipants provided family history information on 41,841 total relatives. We found evidence of underreporting of paternal family history and lower perceived breast cancer risk with cancer in the paternal versus maternal lineage. We observed cancer-specific perceived risks and worry for individual family history elements and also found novel “spillover” effects where a family history of one cancer was associated with altered disease perceptions of another. Having a mother with early-onset breast or ovarian cancer was strongly associated with perceived risk of breast cancer. Age, parenthood, and affected lineage were associated with disease perceptions and ran counter to empiric risks.ConclusionsUnderstanding patients' formulation of risk for multiple diseases is important for public health initiatives that seek to inform risk appraisal, influence disease perceptions, or match preventive interventions to existing risk perceptions.     

Association between screening family medical history in general medical care and lower burden of cancer worry among women with a close family history of breast cancer.

PURPOSE: Soliciting family medical history (FMH) is the initial step in the process of screening for heritable cancer risk in medical care. We investigate whether recent solicitation of FMH in general medical care is associated with cancer worry among a sample of women having a first-degree relative with a breast cancer diagnosis. METHODS: Surveys were mailed to women registered with the Cancer Genetics Network having a first-degree relative with a breast cancer diagnosis and a regular source of medical care. The independent measure consisted of two items for solicitation of FMH based on validated measures of clinical interactions with one's physician; the dependent measure was a novel measure of cancer worry based on validated patient-centered measure of distress; and the secondary measures were 6-point scales for perceived likelihood of developing breast cancer and perceived severity of breast cancer as a health outcome. RESULTS: A total of 353 women responded and met eligibility criteria (76.4% minimum response rate). One fifth reported no cancer worry during the past 4 weeks. After adjustment for age, education, pedigree features, and clustering within families, recent FMH solicitation was associated with lower odds of cancer worry (odds ratio = 0.58; 95% confidence interval = 0.51-0.70). FMH solicitation was associated with lower perceptions of the severity of developing breast cancer but not with the perception of cancer likelihood. CONCLUSIONS: Our data do not support the hypothesis that FMH solicitation in general medical practice causes cancer worry. In fact, we observed a protective association possibly explained by influences on perceptions of breast cancer severity. Prospective research among less select populations is necessary.     

Health locus of control and perceived risk for breast cancer in healthy women

Although early detection is closely linked to survival of breast cancer, many women do not adhere to recommended screening guidelines. One of the most studied factors that contribute to women's screening behavior is their perceived risk of developing breast cancer. In this study, the authors examined contributions of general health locus of control and breast cancer-specific control to understanding perceived risk. Sixty-six healthy women with and without family histories of breast cancer participated in the study. The following were the central findings: (1) internal locus of control and breast cancer-specific control predicted perceived risk, as measured by the certainty of remaining free of breast cancer, and (2) breast cancer-specific control mediated the relationship between internal locus of control and perceived risk. Findings suggest that significant relations between health locus of control and perceived risk variables may be overlooked in the absence of situation-specific measures.     

Family history of breast cancer: what do women understand and recall about their genetic risk?

The current study has two aims: (1) to look at people's recall of risk information after genetic counselling and (2) to determine the impact of receiving an audiotape of the genetic consultation on level of recall, cancer related worry, and women's uptake of risk management methods. Using a prospective randomised controlled design, subjects receiving an audiotape were compared with a standard consultation group. Participants were drawn from attenders at the genetic clinics of two London hospitals and included 115 women with a family history of breast cancer. Assessment of perceived genetic risk, mental health, cancer worry, and health behaviour was made before counselling at the clinic (baseline) and by postal follow up. Usefulness of audiotapes and satisfaction with the clinical service was assessed by study specific measures. The data indicate that cancer worry is reduced by provision of an audiotape of the genetic consultation. Recall of the genetic risk figure, however, is not affected by provision of an audiotape and neither is it related to women's overall perception of being more or less at risk of breast cancer than the average woman. Forty-one percent of women accurately recalled their personal risk of breast cancer at one month follow up; however, 25% overestimated, 11% underestimated, and 23% could not remember or did not know their breast cancer risk. Recall of the risk figure is more accurate when the clinical geneticist has given this to the woman as an odds ratio rather than in other formats. Subsequent health behaviour is unaffected by whether women have an audiotape record of their genetic consultation. Results suggest that having a precise risk figure may be less important than women taking away from the consultation an impression that something can be offered to help them manage that risk. Provision of an audiotape of the consultation is of limited usefulness. The need for psychological care to be better integrated into genetic counselling at cancer family clinics was highlighted by the study. The results are discussed in terms of future service development.     

Breast Cancer-Specific Intrusions are Associated with Increased Cortisol Responses to Daily Life Stressors in Healthy Women Without Personal or Family Histories of Breast Cancer

Studies indicate that women fear breast cancer more than any other disease and that women’s levels of breast cancer-specific intrusions are related to their perceived risk of breast cancer. Here, we explore possible biological consequences of higher breast cancer risk perceptions and intrusions in healthy women without personal or family histories of the disease. We hypothesized that women with higher perceived risk would have more intrusions about breast cancer, which would constitute a background stressor sufficient to increase hypothalamus-pituitary-adrenal axis (HPA) responsivity to daily stress. HPA responses to an ordinary life stressor (work) were assessed in 141 employed women (age=37.2±9.2) without personal or family histories of breast cancer. Urinary cortisol excretion rates were assessed with timed sample collections at work, home, and during sleep. Repeated measures ANOVA revealed a significant Group by Time interaction with higher work cortisol levels in women with breast cancer-specific intrusions compared to women without intrusions (p < 0.02). Regression analyses revealed a significant association between risk perceptions and intrusions (p < 0.001). Regression analysis with intrusions and risk perceptions predicting work cortisol indicated a significant contribution of intrusions (p < 0.04), but not risk perceptions (p=0.53). Overestimation of breast cancer risk is associated with higher levels of breast cancer-specific intrusions that can result in increased cortisol responsivity to daily stressors. This heightened responsivity could have long-term negative health implications.     

Perceived risk for breast cancer and its relationship to mammography in Blacks, Hispanics, and Whites

A challenge for health behavior science is to develop theory and best practices that take cultural diversity into account. Using data from Black, Hispanic, and White respondents to the 2003 Health Information National Trends Survey, we examined racial/ethnic differences in: (1) breast cancer risk perceptions/worry; (2) the associations between perceived risk/worry and ever having received a mammogram; and (3) perceived risk/worry and having had at least 2 mammograms over a 4-year period (consecutive mammography). Compared to White race/ethnicity, Black race/ethnicity was associated with lower perceived absolute risk and comparative risk for developing cancer. For the sample as a whole, higher perceived risk (both absolute risk and comparative risk) and worry predicted greater odds of mammography use; however, this was not true for Hispanics. In stratified analyses, perceived risk and worry were not associated with mammography use for either Hispanics or Blacks whereas they were for Whites; however, this interaction effect was significant only for Hispanics vs. Whites. Results support the need for formative research to identify determinants of health behavior prior to cancer prevention message planning for diverse audiences in order to accommodate racial/ethnic differences not only in the level of perceived risk, but also the association between risk perception to behavior change in that community.     

Stress,Breast Cancer Risk,and Breast Self‐Examination: Chronic Effects of Risk and Worry1

Identifying the risk factors for breast cancer allows targeted prevention and surveillance of women with higher than average risk. Moreover, aggressive, regular surveillance is necessary if mortality is to be reduced by finding disease in its early, more treatable stages. However, learning that one is at risk may cause stress as women worry about developing breast cancer and the severity of its effects. This study examined the distress associated with breast cancer risk by measuring perceived stress, breast cancer worry, risk perception, and surveillance behavior in women with average and higher than average risk profiles. Women at higher risk reported more worry, intrusive thoughts, and emotional upset throughout the year of the study than did women with average risk. In addition, stress reduced adherence to regular breast self‐examination.     

Worry about skin cancer mediates the relation of perceived cancer risk and sunscreen use

Preventive health behaviors are believed to be motivated in part by a person’s perception of risk for a particular health problem. Risk contains a cognitive component, beliefs about the chances of a health problem occurring, and an affective component, fear or worry about the health problem. Although both have been shown to influence behavior, the nature of their interrelation as an influence on behavior has not been examined. Data from the 2005 Health Information National Trends Survey, a US nationally-representative telephone survey was analyzed. Participants reported perceived absolute and comparative risk for skin cancer, feelings of worry about skin cancer, and sunscreen use behavior. Analyses examined main effects models for the relation between perceived risk, worry, and sunscreen use, as well as both moderated and mediated models. For both absolute and comparative risk, the relation between cognitively-based perceived risk for skin cancer and sunscreen use was fully mediated by feelings of worry, as evidenced by significant direct effects of worry (bs > 0.046, ps < 0.01) and indirect effects of risk through worry (bs > 0.19, ps < 0.01). When worry was included in the models, direct effects of risk perceptions were non-significant (bs < 0.11, ps < 0.10). No evidence was found for moderated effects of worry on the relation between risk and behavior. While cognitive risk appraisals do influence decision making and may be addressed by interventions, these findings demonstrate that affectively-based risk components play a key role in behavior regulation. Affectively-based risk might be an effective target for interventions and should be incorporated more fully in decision-making models.     

Association of cancer worry and perceived risk with doctor avoidance: an analysis of information avoidance in a nationally representative US sample

Fear of receiving bad news about one’s health can lead people to avoid seeking out health information that, ironically, may be crucial for health maintenance. Using a nationally representative US sample, the present study examined whether perceived likelihood of developing cancer and worry about cancer were associated with reports of avoiding visits to one’s doctor, in respondents under and over age 50. Cancer worry, but not perceived risk of cancer, predicted doctor avoidance in respondents aged 50 and older, whereas the opposite pattern held for respondents under age 50. Moreover, in respondents aged 50 and older, cancer worry and perceived cancer risk interacted such that cancer worry was linked to doctor avoidance only when respondents also perceived a high likelihood of cancer. The latter result is consistent with the notion that worry may motivate information seeking when people expect information to dispel worry and information avoidance when the information is seen as highly likely to confirm one’s fears. Findings suggest a need for communication strategies that can influence worry and perceived risk differentially. Research should also assess the effectiveness of other behavioral strategies (e.g., automatic scheduling of appointments) as a means for reducing doctor avoidance.     

The impact of family history of breast cancer and cancer death on women's mammography practices and beliefs

PurposeTo summarize the impact of a family history of breast cancer on mammography practices and beliefs.MethodSurvey data concerning breast health practices and beliefs were utilized for a cross-sectional analysis. Participants were 899 racially diverse nonpregnant women 40 years and older without breast cancer. The impact of various aspects of cancer family history on mammography, perceived barriers to and benefits of screening, and perceived breast cancer risk was assessed.ResultsMore women with a first-degree relative with breast cancer reported a mammogram within the past year and rated their breast cancer risk higher. Death of a first-degree relative impacted the belief that breast cancer can be cured with early detection. Degree of relatedness of affected relative impacted mammography practice and risk perceptions.ConclusionFamily history of breast cancer impacted mammography adherence, beliefs about outcomes with early detection, and risk perceptions. Breast cancer death in a family may be a better predictor of beliefs about breast cancer detection and cure than family history of cancer alone. These findings have implications for how screening recommendations and risk information are communicated to patients with different familial cancer experiences.     

Psychological and social determinants of women's decisions to undergo genetic counseling and testing for breast cancer

This study examined the demand for breast cancer genetic testing and counseling among Canadian women diagnosed with breast cancer under the age of 50, together with some of the factors predicting both their intentions to be tested and the degree to which they act on their intentions. Participants were 110 women under the age of 50 and comprised of two groups: 1) women diagnosed with breast cancer (BC, n = 60): and 2) an index group of unaffected women from the general population (GP, n = 50). All participants completed a survey that addressed family history of breast and other cancers, demographic variables, knowledge and attitudes about breast cancer, and genetic testing. Members of the BC group were offered genetic counseling and testing for BRCA1 and BRCA2 free of charge. Overall, 60% of participants indicated they would like the test, and 40% either did not want it or were uncertain. Seventy-two percent of women in the BC group wanted to be tested. Of these, only 49% had actually contacted the genetic counselor about testing at follow-up 3-15 months later. Intention to be tested was associated with presence of breast cancer, greater perceived benefits of testing, fewer perceived 'costs' of testing, and higher levels of concern about the risk of relatives developing breast cancer. Actual arranging to meet with the genetic counselor among women in the BC group was associated with fewer perceived costs of having the test. Results suggest a moderate level of interest in gene testing, though intention to be tested may not translate into actual uptake. Women who do choose to have the test may believe the potential 'costs' of using this new genetic technology to be relatively few. This has implications for genetic counselors in terms of providing balanced and complete information to women considering genetic testing for breast cancer susceptibility.     

Psychological functioning of daughters of breast cancer patients. Part I: Daughters and comparison subjects

Sixty daughters of mothers with breast cancer were matched for age, educational level, and race with 60 comparison subjects without a maternal history of breast cancer to assess the impact on psychological adjustment, coping, body image, sexual functioning, and health knowledge and practices of having had a mother with breast cancer. Daughters of breast cancer patients showed significantly less frequent sexual intercourse, lower sexual satisfaction, and greater feelings of vulnerability to breast cancer, and they could identify a greater number of symptoms of breast cancer. No differences between groups were found in psychological symptoms, coping styles, breast self-examination practices, mammography practices, health knowledge, or body-image ratings. Contrary to clinical studies, women at risk for breast cancer showed good overall coping with few signs of significant dysfunctions in relation to comparison subjects.     

The development of a psychoeducational intervention for women living with an increased risk of breast cancer

Research has shown a widespread need for written information on topics related to familial risk of breast cancer amongst women who have been living with an increased risk of the disease for several years. This article describes the development of a psychoeducational intervention designed to meet the needs of these women. Following a review of the literature and existing information resources, a multidisciplinary group developed a written information pack consisting of scientific and psychosocial (self-help) information with the aim of improving knowledge and reducing cancer worry. The information pack has been evaluated by seven independent health professionals and piloted on eight women at increased risk of breast cancer. Aspects of readability and presentation have been considered. The results of a randomised controlled trial of the intervention, which will inform the current provision of clinical services for these women, will be reported elsewhere.     

Decisional conflict among breast cancer patients considering contralateral prophylactic mastectomy

Objectives

The study’s goals were to characterize decisional conflict and preparedness for making the decision about having CPM among breast cancer patients considering CPM who do not carry cancer-predisposing mutation and to evaluate correlates of decisional conflict and preparedness.

Perception of cancer recurrence risk: More information is better

Objective

Breast cancer is the most common cancer among women worldwide. Given the advances in extending survival, the number of recently diagnosed breast cancer patients and longer-term breast cancer survivors is growing. The goals of this study were to better understand (1) perceptions of provider cancer recurrence risk communication, (2) perceived risk of breast cancer recurrence in cancer patients and survivors, and (3) accuracy of perceived risk.

Methods

A survey was conducted on women with a prior breast cancer (n = 141).

Results

Approximately 40% of women perceived that providers had not talked about their breast cancer recurrence risk; although only 1 person reported not wanting a physician to talk to her about her risk. Women were largely inaccurate in their assessments of risk. Greater worry, living in a rural area, and longer time since diagnosis were associated with greater inaccuracy. Women tended to think about distal recurrence of cancer as often of local recurrence.

Conclusions

Perceived risk of breast cancer recurrence was inaccurate, and patients desired more communication about recurrence risk.

Practice implications

Consistent with findings from other studies, greater efforts are needed to improve the communication of cancer recurrence risk to patients. Attention should be paid to those from rural areas and to distal cancer recurrence in women with a previous history of breast cancer.     

The risk of contralateral breast cancer in daughters of women with and without breast cancer

We aimed to estimate the 15‐year and lifetime risks of contralateral breast cancer in breast cancer patients according to the age of diagnosis of the first cancer and the history of breast cancer in the mother. The risks of contralateral breast cancer were estimated for all 78,775 breast cancer patients in the Swedish Family‐Cancer Database (age at diagnosis of first breast cancer <70 years). The risk of experiencing a contralateral breast cancer within 15 years of diagnosis was 8.4% [95% confidence interval (CI): 8.1–8.7%] for women with an unaffected mother, was 12% (95%CI: 11–13%) for a woman with a mother with unilateral breast cancer and was 13% (95%CI: 9.5–17%) for women with a mother with bilateral breast cancer. In early‐onset diagnosed women (<50 years) with an unaffected mother, the risk of contralateral breast cancer until age 80 was 23% (95%CI: 20–26%) and for late‐onset (50–69 years) diagnosed women it was 17% (95%CI: 14–21%). In a woman with a mother with an early‐onset unilateral breast cancer, risk of contralateral breast cancer by age 80 was 35% (95%CI: 25–46%). Women with a mother with early‐onset bilateral breast cancer had 31% (95%CI: 12–67%) lifetime risk of contralateral breast cancer. The risk of contralateral breast cancer is higher for daughters of breast cancer patients than for daughters of women without breast cancer. Maternal cancer history and age at onset of first breast cancer in women should be taken into account when counseling breast cancer patients about their risk of contralateral breast cancer.     

Worry about ovarian cancer risk and use of screening by high-risk women: how you recruit affects what you find

Several studies have described the characteristics of women at high-risk for ovarian cancer who are participating in registry studies and high-risk screening programs. These studies have found high-risk women to report high levels of perceived risk and worry about their risk for ovarian cancer. In contrast, population based studies have found that while high-risk women did report high levels of perceived risk, they did not report high levels of worry about their risk. In this study, we examine reports of perceived risk, worry about ovarian cancer, and use of screening by high-risk women recruited to participate in a survey from several recruitment sources. These sources include self-, physician-, and affected patient relative-referral, a fundraising mailer, and a mass mailing to a commercial mailing list. High-risk women recruited via mass mailing were less likely than those recruited via physicians or affected relatives to report either worry about their risk or use of ovarian cancer screening tests.     

Left and right sided breast cancer

Many studies have shown that unilateral breast cancer is more frequent in the left breast than in the right. This has been investigated in the Icelandic Cancer Registry. Information on all but 18 female breast cancer cases diagnosed in the forty-year-period from 1948 to 1987, a total of 2139 cases, was used. Of these 2011 were unilateral, 1069 were in the left breast, an excess of 13%. Primary breast cancer in both breasts was diagnosed in 81 women, 35 in the left breast first, and 46 in the right breast first. The excess risk of developing cancer remains for the left breast also for women who have already lost one breast because of cancer. Information on whether their relatives had developed breast cancer existed for 1197 of these women. Patients with an affected first degree relative were of 2.54 fold risk of developing contralateral primary breast cancer, but women with no affected relative were at a reduced risk (not significant). Patients with right sided breast cancer are more likely to have a relative with breast cancer. The breast cancer status of the relatives did not influence the risk of death, so a better survival of familial cases could not be shown.     

Effects of a Web-based intervention on women's breast health behaviors

Helping women make choices to reduce cancer risk and to improve breast health behaviors is important, but the best ways to reach more people with intervention assistance is not known. To test the efficacy of a Web-based intervention designed to help women make better breast health choices, we adapted our previously tested, successful breast health intervention package to be delivered on the Internet, and then we tested it in a randomized trial. We recruited women from the general public to be randomized to either an active intervention group or a delayed intervention control group. The intervention consisted of a specialized Web site providing tailored and personalized risk information to all participants, followed by offers of additional support if needed. Follow-up at 1-year post-randomization revealed significant improvements in mammography screening in intervention women compared with control women (improvement of 13 percentage points). The intervention effects were more powerful in women who increased breast health knowledge and decreased cancer worry during intervention. These data indicate that increases in mammography can be accomplished in population-based mostly insured samples by implementing this simple, low resource intensive intervention.     

Hormone replacement therapy and breast cancer

Numerous studies on oestrogen replacement therapy have failed to incriminate the use of exogenous oestrogen as a cause of breast cancer in post-menopausal women. Since so many variables influence breast cancer risk, it has not been possible for any single study to evaluate every potential risk factor included in the epidemiological and clinical reports on hormone use and carcinoma of the breast. The relative risk (RR) for breast cancer in oestrogen users has been found to vary from 0.4 to 3.4, with the vast majority of investigators reporting an RR very close to 1.0, or no increased risk at all. There is growing evidence that progesterone deficiency may increase the risk for breast cancer in some women. At least three studies have indicated that the addition of progestogen to oestrogen replacement therapy may significantly decrease the risk for carcinoma of the breast. It was observed that the RR of breast cancer varied from 0.47 to 0.89 in these studies when oestrogen-progestogen users were compared with unopposed oestrogen users. However, it is pointed out that progestogens are not added to oestrogen replacement therapy to negate an increased risk of breast cancer from unopposed oestrogens, since oestrogen therapy does not increase the risk. Combination oestrogen-progestogen therapy is recommended for hormone replacement treatment, even in women who have had a hysterectomy, because it will reduce the risk for breast cancer in some women.