Predictors of Cancer Worry in Unaffected Women from High Risk Breast Cancer Families: Risk Perception is not the Primary Issue

Some women at increased familial risk of breast cancer experience elevated levels of cancer-specific worry, which can possibly act as a barrier to screening, and may be a significant factor in decisions regarding risk-reducing surgery. The aim of this study was to comprehensively examine predictors of cancer-specific worry in high risk women and to test a model which proposes that perceived breast cancer risk mediates the impact of other factors on worry. 1,437 unaffected women from high risk breast cancer families completed questionnaires and interviews. Path analysis was used to test the model of potential predictors of cancer worry, including familial, personal and psychological variables, mediated via perceived cancer risk. Levels of cancer-specific worry were generally low despite an average perceived risk of 50.3%. The goodness-of-fit of the proposed model was poor, explaining only 9% of the variance for perceived risk and 10% of the variance for cancer specific worry. An alternative model of a direct relationship between all of the predictor variables and cancer worry, explained 24% of the variation in cancer worry. General anxiety, perceived risk, the stressful impact of recent cancer related events, a relative risk greater than 10, being closer in age to the youngest breast cancer diagnosis in family, and knowledge of personal mutation status, all independently contributed to cancer worry. Addressing general affective responses, experiences of recent cancer related events, in addition to education about personal risk, should be considered in counselling women with elevated cancer worry. Risk perception appears to act independently of other factors in its formulation and impact on cancer worry. Further research on the way in which women come to perceive their risk is indicated. The kConFab Psychosocial Group are (in alphabetical order of institution): Brain and Mind Institute, University of Sydney, Australia (I Hickie) Department of Haematology and Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Australia (K-A Phillips) Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia (B Bennett, B Meiser, K Tucker) Department of Oncology, St Vincent’s Hospital, Melbourne, Australia (S-A MaLachlan) Department of Psychological Medicine, Royal North Shore Hospital, St Leonards, Australia (C Tennant); Medical Psychology Research Unit, University of Sydney, Australia (P Butow, M Price).     

Impact of Genetic Counseling in Women with a Family History of Breast Cancer in Italy

As the impact of breast cancer (BC) risk assessment in asymptomatic women with a family history of BC had never been explored in Italy, we performed a study on a retrospective series of women who had undergone BC risk assessment. To this aim, a semi-structured telephone interview was administered to 82 women. Most participants considered the information received as clear (96.2 %) and helpful (76.8 %). Thirty-eight (46.3 %) stated that their perceived risk of BC had changed after the counseling: for 40.2 % it had decreased, for 6.1 % increased; however, women highly overestimating their risk at the baseline (≥4-fold) failed to show improvements in risk perception accuracy. Sixty-six women (80.5 %) stated they had followed the recommended surveillance, while 19.5 % had not, mainly due to difficulties in arranging examinations. Most women (89.0 %) had shared the information with their relatives, with 57.3 % reporting other family members had undertaken the recommended surveillance. BC risk assessment was associated with high rates of satisfaction and had a favorable impact on risk perception in a subgroup of women. The impact on surveillance adhesion extended to relatives. Organized programs for identification and surveillance may help identify a larger fraction of at-risk women and overcome the reported difficulties in arranging surveillance.     

Perceived Versus Predicted Risks of Colorectal Cancer and Self-Reported Colonoscopies by Members of Mismatch Repair Gene Mutation-Carrying Families Who Have Declined Genetic Testing

People carrying germline mutations in mismatch repair genes are at high risk of colorectal cancer (CRC), yet about half of people from mutation-carrying families decline genetic counselling and/or testing to identify mutation status. We studied the association of quantitative measures of risk perception, risk prediction and self-reported screening colonoscopy in this elusive yet high-risk group. The sample of 26 participants (mean age 43.1 years, 14 women) in the Australasian Colorectal Cancer Family Registry were relatives of mutation carriers; had not been diagnosed with any cancer at the time of recruitment and had declined an invitation to attend genetic counselling and/or testing. A structured elicitation protocol captured perceived CRC risk over the next 10 years. Self-reported colonoscopy screening was elicited during a 45-minute semi-structured interview. Predicted 10-year CRC risk based on age, gender, known mutation status and family history was calculated using “MMRpro.” Mean perceived 10-year risk of CRC was 31 % [95 % CI 21, 40], compared with mean predicted risk of 4 % [2, 7] (p?<?0.001); this was independent of age and sex (p?=?0.9). Among those reporting any medical advice and any screening colonoscopy (n?=?18), those with higher risk perception had less frequent colonoscopy (Pearson’s r?=?0.49 [0.02, 0.79]). People who decline genetic testing for CRC susceptibility mutations perceive themselves to be at substantially higher risk than they really are. Those with high perceived risk do not undertake screening colonoscopy more often than those who perceive themselves to be at average risk.     

Effects of Counseling and Ethnic Identity on Perceived Risk and Cancer Worry in African American Women

Improving breast screening behaviors in African American women is an important public health goal. To increase participation in screening, it is necessary to identify factors that contribute to reduced screening, including perceived risk and cancer worry. This paper presents predictors of changes perceived in risk and worry among African American women of differing ethnic identities as they undergo breast cancer risk counseling. Participants (n = 113) were recruited from community sources to a study of counseling for breast cancer risk. They completed a baseline assessment, randomly received breast cancer risk counseling or served as a control group, and completed a follow-up assessment. Counseling produced significant differences in perceived risk and cancer worry. Predictors of risk and worry changes, as a result of counseling, included income and ethnic identity. These data can guide better services for African American women and research into the complexity of the effects of ethnic identity on health.     

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.     

Risk Perception,Worry and Satisfaction Related to Genetic Counseling for Hereditary Cancer

In this multi center study, genetic counseling for hereditary cancer was evaluated by assessing patients’ worry, perceived risk of developing cancer and satisfaction with genetic counseling. An overall aim was to identify characteristics of vulnerable patients in order to customize genetic counseling. In addition, agreement between patients’ and counselors’ scores was measured. A total of 275 Norwegian patients were consecutively recruited, and 213 completed questionnaires before and after genetic counseling. Patients’ perceived risk decreased after the genetic counseling session. There was incongruence between risk perception expressed as a percentage and in words. Patients were significantly less worried after counseling. Higher levels of worry were predicted by low instrumental satisfaction with counseling, high degree of perceived risk of developing cancer and younger age. In conclusion, counselors met the patients’ psychological needs to a satisfactory degree during counseling. However, patients did not fully understand their risk of developing cancer.     

Predicting Screening Uptake by First‐Degree Relatives of Patients Diagnosed with Colorectal Cancer1

Colorectal cancer represents a significant health threat worldwide. First‐degree relatives (FDRs) of colorectal cancer patients are at increased risk of developing the disease. There is a need to understand the psychosocial predictors of screening uptake in this group. An extended theory of planned behavior (TPB) that included perceived risk was employed to do this. Telephone interviews were conducted with 110 FDRs. The TPB accounted for up to 51% and between 16% and 25% of the variance in intention and behavior, respectively. Injunctive norm emerged as the strongest predictor of screening intention. Therefore, it is recommended that interventions to maximize screening uptake target this variable in particular.     

Cost Sharing and Hereditary Cancer Risk: Predictors of Willingness-to-Pay for Genetic Testing

Increasing use of predictive genetic testing to gauge hereditary cancer risk has been paralleled by rising cost-sharing practices. Little is known about how demographic and psychosocial factors may influence individuals’ willingness-to-pay for genetic testing. The Gastrointestinal Tumor Risk Assessment Program Registry includes individuals presenting for genetic risk assessment based on personal/family cancer history. Participants complete a baseline survey assessing cancer history and psychosocial items. Willingness-to-pay items include intention for: genetic testing only if paid by insurance; testing with self-pay; and amount willing-to-pay ($25–$2,000). Multivariable models examined predictors of willingness-to-pay out-of-pocket (versus only if paid by insurance) and willingness-to-pay a smaller versus larger sum (≤$200 vs. ≥$500). All statistical tests are two-sided (α?=?0.05). Of 385 evaluable participants, a minority (42 %) had a personal cancer history, while 56 % had ≥1 first-degree relative with colorectal cancer. Overall, 21.3 % were willing to have testing only if paid by insurance, and 78.7 % were willing-to-pay. Predictors of willingness-to-pay were: 1) concern for positive result; 2) confidence to control cancer risk; 3) fewer perceived barriers to colorectal cancer screening; 4) benefit of testing to guide screening (all p?p?相似文献   

Life Events may Contribute to Family Communication About Cancer Risk Following BRCA1/2 Testing

We assessed whether certain life events contributed to the communication about cancer risk within families who have undergone BRCA1/2 testing. We also explored what type of resources participants would have valued to help in supporting family communication about genetic information. Two hundred and forty-six individuals (218 women, 28 men) who received a BRCA1/2 genetic test result 3 to 10 years earlier (mean of 6.4 years) participated in a telephone interview. Participants were asked about the occurrence of a number of life events (cancer diagnosis, death, uptake of prophylactic surgery, and providing care to a family member with cancer) in their family since their BRCA1/2 test result disclosure and, for each occurrence, whether it fostered family communication about cancer risk. A total of 182 participants (74 %) reported that they or one of their relatives received a cancer diagnosis, 176 (72 %) reported that someone died in their family, and 73 (30 %) stated that they or one of their relatives undertook a prophylactic surgery. During this period, 109 participants (44 %) also provided care for a family member who had cancer. Among participants who reported these life events, family communication was fostered by these events in proportions varying from 50 % (death) to 69 % (cancer diagnosis). Our results indicate that life events may contribute to family communication about cancer risk. Further research is needed to determine whether these events provide a “window of opportunity” to reach family members, address their needs and concerns about cancer, update family cancer history, and introduce genetic counseling and risk assessment.     

Breast Cancer Risk Assessment at the Time of Screening Mammography: Perceptions and Clinical Management Outcomes for Women at High Risk

The purpose of this study was to evaluate the utility of a breast cancer risk assessment (BCRA) at the time of screening mammogram. Women whose BCRA indicated a high risk for cancer received a letter with instructions for breast health care and genetic counseling if appropriate. After 6 months this group received surveys to evaluate their risk perception and their recall of, and compliance with, recommendations. We also explored the impact of other variables such as a recommendation for genetic counseling and physician communication with the women. After the BCRA, the majority of high risk women reported no change in their perceived risk of cancer. A woman’s perceived risk of cancer after a BCRA was significantly associated with her recall of recommendations for breast health care, but not with compliance. A recommendation for genetic counseling was not significantly related to women’s perceived risk of cancer after the BCRA. Ten percent of women who should have obtained genetic counseling actually completed an appointment. Women who discussed their BCRA results with their physicians were more compliant with a six month breast exam with a doctor (53% vs 17%, p = 0.018). Overall, women felt that the BCRA was helpful and did not cause undue stress or anxiety. Although the cohort’s compliance with recommendations was suboptimal, physicians’ interactions with their patients may have a positive influence on their compliance.     

Enhancing the effects of a narrative message through experiential information processing: An experimental study

First-person narratives are becoming a popular means to communicate health risk information. Although studies show they can increase risk perception and motivate health behaviours compared to statistical messages, more research on the conditions in which they are particularly likely to have effects is needed. In this study, we tested a moderator related to how information is processed. Specifically, we hypothesised that thinking in terms of emotions and personal experiences – known as experiential information processing – would increase people’s responsiveness to a narrative. Female college students (N = 138) who reported indoor tanning were randomly assigned to read a first-person narrative message or a statistical message about the risks of skin cancer. Prior to reading the message, the women received instructions that would activate either experiential or rational information processing. Participants then reported their risk perceptions of skin cancer, worry about skin cancer and behaviour intentions related to skin cancer. Analyses showed that message type and information processing interacted to influence risk perceptions and worry. Consistent with hypotheses, participants reported the highest risk perception and worry when they used an experiential information system prior to reading the narrative message. There were no effects on behaviour intentions. Implications of these findings are discussed.     

Counselees’ Expressed Level of Understanding of the Risk Estimate and Surveillance Recommendation are Not Associated with Breast Cancer Surveillance Adherence

We studied counselees’ expressed understanding of the risk estimate and surveillance recommendation in the final consultation for breast cancer genetic counseling in relation with their risk perception, worry and cancer surveillance adherence 1 year post-counseling. Consecutive counselees were included from 2008 to 2010. Counselees with an indication for diagnostic DNA-testing for themselves or a breast cancer affected relative were requested to complete online questionnaires before and after counseling and one year after counseling (N?=?152–124). Self-reported surveillance was compared to surveillance recommendations. Consultations were videotaped. Counselees’ reactions to the risks and recommendations were coded. Statements about the risk perception and surveillance intentions of breast cancer unaffected counselees were transcribed. Associations with outcomes were explored. Almost all breast cancer unaffected counselees (>90 %) reacted to their risk estimate with an utterance indicating understanding and this reaction was not significantly associated with their post-visit risk perception alignment. Over one-third (38.6 %) overestimated their risk post-counseling. Few counselees (5.8 %) expressed surveillance intentions. One year after counseling, about three-quarters (74.0 %) of the breast cancer unaffected counselees had adhered to the surveillance recommendation. Almost one-quarter (23.3 %) had performed more mammograms/MRI scans than recommended, which was associated with prior mammography uptake (n?=?47; X ² ?=?5.2; p?=?.02). Counselees’ post-counseling overestimation of their risk, high levels of worry and high surveillance uptake were not reflected in their reactions to the counselor’s information during the final visit.     

Using the common-sense model to predict risk perception and disease-related worry in individuals at increased risk for venous thrombosis.

OBJECTIVE: This study applied the Common-Sense Model (CSM) to predict risk perception and disease-related worry in 174 individuals with a genetic predisposition to venous thrombosis (thrombophilia). DESIGN: Participants completed an adapted version of the Illness Perception Questionnaire-Revised (IPQ-R) and measures assessing risk perception and worry. RESULTS: Regression analyses revealed that illness perceptions were predictors of risk perception and thrombosis worry. The hypothesis that illness perceptions mediate the relationship between a person's experience of venous thrombosis and perceived risk and thrombosis worry could not be confirmed. CONCLUSIONS: Further research should refine the IPQ-R for populations at risk of a disease and examine the value of the CSM in explaining the relationship between risk perception, worry, and health behavior.     

Prognostic Factors for Distress After Genetic Testing for Hereditary Cancer

The psychological impact of an unfavorable genetic test result for counselees at risk for hereditary cancer seems to be limited: only 10–20 % of counselees have psychological problems after testing positive for a known familial mutation. The objective of this study was to find prognostic factors that can predict which counselees are most likely to develop psychological problems after presymptomatic genetic testing. Counselees with a 50 % risk of BRCA1/2 or Lynch syndrome completed questionnaires at three time-points: after receiving a written invitation for a genetic counseling intake (T1), 2–3 days after receiving their DNA test result (T2), and 4–6 weeks later (T3). The psychological impact of the genetic test result was examined shortly and 4–6 weeks after learning their test result. Subsequently, the influence of various potentially prognostic factors on psychological impact were examined in the whole group. Data from 165 counselees were analyzed. Counselees with an unfavorable outcome did not have more emotional distress, but showed significantly more cancer worries 4–6 weeks after learning their test result. Prognostic factors for cancer worries after genetic testing were pre-existing cancer worries, being single, a high risk perception of getting cancer, and an unfavorable test result. Emotional distress was best predicted by pre-existing cancer worries and pre-existing emotional distress. The psychological impact of an unfavorable genetic test result appears considerable if it is measured as “worries about cancer.” Genetic counselors should provide additional guidance to counselees with many cancer worries, emotional distress, a high risk perception or a weak social network.     

Predicting Participation in Cancer Screening: The Role of Perceived Behavioral Control1

We examined the role played by perceived behavioral control in predicting participation in colorectal cancer screening among individuals recently informed that they were at high risk for this type of cancer. A telephone interview based primarily on the theory of reasoned action was administered to 96 high-risk individuals and 144 average-risk individuals. All participants then were sent materials needed to complete the screening test. In both groups, perceived behavioral control enhanced prediction of intention to complete the test over and above the contributions of attitude and subjective norm. In addition, perceived behavioral control had a direct effect on behavior but only in the high-risk group. Further, for high-risk subjects, knowledge about test procedures moderated the relationship of perceived behavioral control and intention to behavior, but in ways only partially consistent with theory. Finally, the model was better at predicting behavior in the average than in the high-risk group. We conclude that perceived behavioral control plays an important role in the prediction of screening behavior. Perceived behavioral control's motivational role manifests itself unambiguously through its influence on intention. The role of perceived behavioral control above and beyond its influence on intention, however, needs further study and clarification.     

Pancreatic Cancer Surveillance Among High-Risk Populations: Knowledge and Intent

Pancreatic cancer is the fourth most common cancer in both men and women in the United States. It has the lowest survival rate of all cancers, largely due to the presence of non-specific symptoms, leading to diagnosis at advanced stages. While the majority of cases of pancreatic cancer are sporadic, up to 10% may be associated with an inherited predisposition. Currently, there is no standard screening protocol for pancreatic cancer, although this will change in the future as technology improves. Additionally, there is little information regarding the perceptions and intent to screen for pancreatic cancer among those with an increased risk due to a hereditary cancer predisposition syndrome, which was the objective of this study. Focus groups and individual telephone interviews were conducted, with questions focused on knowledge about pancreatic cancer and screening, perceived motivators, and perceived barriers related to each of the screening techniques currently available. Participants were recruited from the High Risk Breast Cancer and Pancreatic Cancer Registries at Huntsman Cancer Institute. The findings of this study indicated that individuals from these high-risk groups have low knowledge levels of pancreatic cancer screening, despite their desire for this information. Motivation to undergo a particular screening technique is related to whether the test is recommended by a physician, cost, degree of invasiveness, and comfort level. This information is useful to genetics professionals who counsel at-risk individuals, physicians who formulate patient care plans, and translational researchers who are developing pancreatic screening methods.     

Genetic Counseling Outcomes: Perceived Risk and Distress After Counseling for Hereditary Colorectal Cancer

Genetic counseling may turn risk information into cancer prevention behavior by modifying health beliefs and cancer-related distress. We assessed the effect of genetic counseling on these factors in 101 adult first-degree-relatives of colorectal cancer patients from families with known or suspected hereditary nonpolyposis colorectal cancer. Before counseling and once afterward, subjects completed self-report measures of perceived lifetime risk and cancer-distress. Most persons overestimated their cancer risk, and higher perceived risk was associated with believing that colorectal cancer cannot be prevented. Individual perceived risk changed after counseling, although mean perceived risk was unchanged. After adjusting for baseline risk, older persons and those with higher estimated objective cancer risk had larger postcounseling decreases. Distress after counseling was positively correlated with baseline distress and anxiety symptoms, and inversely correlated with tolerance for ambiguity. The findings suggest counseling interventions that should increase the likelihood of screening and offer hypotheses for future research.     

Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from <Emphasis Type="Italic">BRCA1/2</Emphasis> Negative Families

Scientific advances have allowed the development of multiplex gene-panels to assess many genes simultaneously in women who have tested negative for BRCA1/2. We examined correlates of interest in testing for genes that confer modest and moderate breast cancer risk and risk communication preferences for women from BRCA negative families. Female first-degree relatives of breast cancer patients who tested negative for BRCA1/2 mutations (N = 149) completed a survey assessing multiplex genetic testing interest and risk communication preferences. Interest in testing was high (70 %) and even higher if results could guide risk-reducing behavior changes such as taking medications (79 %). Participants preferred to receive genomic risk communications from a variety of sources including: primary care physicians (83 %), genetic counselors (78 %), printed materials (71 %) and the web (60 %). Factors that were independently associated with testing interest were: perceived lifetime risk of developing cancer (odds ratio (OR) = 1.67: 95 % confidence interval (CI) 1.06–2.65) and high cancer worry (OR = 3.12: CI 1.28–7.60). Findings suggest that women from BRCA1/2 negative families are a unique population and may be primed for behavior change. Findings also provide guidance for clinicians who can help develop genomic risk communications, promote informed decision making and customize behavioral interventions.     

Applying a cognitive behavioral model of health anxiety in a cancer genetics service.

A cognitive-behavioral model of health anxiety was used to investigate reactions to genetic counseling for cancer. Participants (N = 218) were asked to complete a questionnaire beforehand and 6 months later. There was an overall decrease in levels of cancer-related anxiety, although 24% of participants showed increased cancer-related anxiety at follow-up. People who had a general tendency to worry about their health reported more cancer-related anxiety than those who did not at both time points. This health-anxious group also showed a postcounseling anxiety reduction, whereas the others showed no significant change. Participants with breast or ovarian cancer in their family were more anxious than participants with colon cancer in their family. Preexisting beliefs were significant predictors of anxiety, consistent with a cognitive-behavioral approach.     

Promotion of Cancer Family History Awareness: Jameslink Cancer Risk Assessment Tool at Community Health Fairs

This article examines the impact of providing personalized familial cancer risk assessments with the Jameslink Cancer Risk Assessment Tool. Users of the Jameslink (N = 166) at eight community health fairs completed a survey including demographic, psychosocial and behavioral variables to better understand responses to the Jameslink. No differences were found between whites and those of other races for variables of interest, indicating suitability of the Jameslink for diverse populations. Those with higher Jameslink-assessed risk had higher perceived risk of cancer. Approximately half (53.8%) reported that they would speak to their physician about their Jameslink-assessed risk. A regression found Jameslink-assessed risk, cancer worry, and perceived risk of cancer predicted intentions to speak to a physician about their risk. In addition, open-ended data provided suggestions to improve the Jameslink. Changes in content and format were suggested; however most were happy with the program and encouraged its promotion. The lack of findings for differences as a function of race bolsters the use of computerized Cancer Risk Assessment Tools in diverse communities. The positive feedback of users and the close association between cancer risk assessment, perceived risk, and intention to speak to a physician are supportive of continued use and development of Cancer Risk Assessment Tools in the community to promote awareness of cancer risk.