Cancer Risk Assessment and Genetic Counseling in an Academic Medical Center: Consultands' Satisfaction, Knowledge, and Behavior in the First Year

In 1995, we formally established a multifaceted cancer genetics program of clinical services, research, and education at a general academic medical center. In the first year, 58 families, mostly physician referred, received cancer risk assessment and genetic counseling for a family and/or medical history of cancer. The primary reasons for seeking consultation were to determine their risk or their offspring's risk for developing certain cancers and to inquire about the availability of DNA testing for predisposition to breast, ovarian, or colon cancers. To assess the level of satisfaction with program services, 51 consultands (22% with a personal history of cancer) were interviewed independently by telephone 3–12 months after the session. One goal of the survey was to improve program service. Ninety percent of respondents reported that the consultation was worth their time and money. Forty-two percent stated that their anxiety related to their cancer risk had decreased following counseling and 56% indicated no change. Recall of exact numerical risk was poor and one-third could not remember hearing any risk estimate. More respondents would recommend the service to friends (90%) than to family members (75%). Overall, the service was positively received by the majority of patients.     

Subjective and Objective Risks of Carrying a BRCA1/2 Mutation in Individuals of Ashkenazi Jewish Descent

This repeated measures study examines (1) the change in subjective risk of mutations pre- to postcounseling, (2) the accuracy of BRCAPRO estimates of mutations, and (3) the discrepancy between subjective risk and BRCAPRO estimates of mutations before and after genetic counseling. Ninety-nine Ashkenazi Jewish individuals pursued testing for BRCA1/2 mutations. Most had a personal cancer history (N = 51; family only: N = 48); and received uninformative negative results (N = 66; positives: N = 23; informative negative: N = 10). The coping strategy of defensive pessimism predicts that individuals will believe the worst case scenario to better cope with a potential negative outcome. Consistent with this, most felt they would have a mutation, if not mutations in both genes. The BRCAPRO model appeared to overestimate risk of having a mutation in this sample (p < .001). BRCAPRO overestimates notwithstanding, genetic counseling increased accuracy of subjective risk (p < .01). Individuals with a family-only cancer history had the least accurate estimates of risk (p < .05) and may need further intervention to either manage anxiety or improve knowledge.     

Self-efficacy,psychological adjustment and decisional-balance regarding decision making for outpatient chemotherapy in Japanese advanced lung cancer

This study examined the application of the trans-theoretical model (TTM) for readiness for decision-making of outpatient chemotherapy of Japanese advanced lung cancer patients by a cross sectional questionnaire survey. A questionnaire was conducted with 105 Japanese patients diagnosed with advanced lung cancer receiving chemotherapy. We classified them according to the TTM stages, including 4 in precontemplation, 42 in contemplation, 22 in preparation, and 35 in action. The valid model (χ ² (37) = 42.56, p = 0.24; GFI = 0.93; AGFI = 0.88; CFI = 0.98; RMSEA = 0.04; AIC = 100.56) derived from structural equation modeling (SEM) revealed that stage of outpatient chemotherapy was significantly affected mostly by decisional-balance (β = 0.60, p < 0.001) and partially by time from the patient's house to the hospital (β = ?0.15, p < 0.10), and that decisional-balance was significantly affected by self-efficacy (β = 0.48, p < 0.001) and nausea (β = ?0.23, p < 0.01). The findings from our study provided encouraging results for adopting the TTM in decision making for outpatient chemotherapy in Japanese cancer care and several clinical implications were obtained from the results.     

A Structural Model for Adjustment to Aging among Older Women in Breast Cancer Remission

This study aims to build a structural model to explore the predictors of adjustment to aging (AtA) reported by older women in breast cancer remission. A community-dwelling sample of 771 older women in breast cancer remission aged between 75 and 98 years answered a questionnaire to determine socio-demographic (age, income, marital status, education, household, and living setting), and health-related characteristics (self-reported functional limitations and disabilities, time since remission, other type of cancer, breast reconstruction, perceived health, recent disease and medication). Several measures were employed to assess AtA, sense of coherence and subjective well-being. Structural equation modeling was used to explore a structural model of the self-reported AtA, encompassing all variables. Significant predictors of AtA are self-reported disability (β = .404; p < .001), time since remission (β = .371; p < .001), perceived health (β = .257; p < .001), other type of cancer (β = .231; p < .001), breast reconstruction (β = .153; p = .008), marital status (β = .141; p < .001), sense of coherence (β = .140; p < .001), and living setting (β = .139; p = .006). These variables accounted for 84.3% of the variability of AtA. Self-reported disability and time since remission were the strongest predictors of AtA. Our findings suggest that health care interventions with older women in breast cancer remission still living in the community may benefit from clearly including these predictors of AtA, as they are relevant for promoting older women’ s aging well.

     

Does a self management intervention lower distress in woman diagnosed with breast cancer?1

Psychological distress is particularly common with any cancer diagnosis. This paper examined the psychological distress in a cohort of women newly diagnosed with breast cancer and postulates on the underlying theory. A longitudinal study of a cohort of women (n = 147) diagnosed with breast cancer (within the past 1 year), was conducted at University Malaya Medical Centre, Kuala Lumpur. Data were collected at baseline and at post 4‐week intervention. Analysis of variance was conducted to examine for any significant differences in the change‐scores between the experimental group (n = 69) and the control group (n = 78). Using the change scores, analyses of variance showed significant differences between groups for stress, F(1, 140) = 13.68, p < .0001, anxiety F(1, 140) = 8.44, p < .004, and depression, F(1, 140) = 11.57, p < .0001. Levels of stress, anxiety and depression generally decreased significantly in the experimental groups, p < .05, but either maintained or increased in the control group. This study indicates that the level of psychological distress of women with breast cancer can be ameliorated with a 4‐week self‐management intervention. Lower stress levels were also found in women who reported engagement in higher physical activity than women with low physical activity.     

Breast and Ovarian Cancer: The Forgotten Paternal Contribution

Five to 10% of all cases of breast and ovarian cancer are attributed to a heritable genetic predisposition. Transmission of BRCA1 and BRCA2 mutations is equally likely through maternal or paternal lineage; however, fewer referrals to cancer genetics clinics appear to be made for a paternal, than maternal, family history of breast and/or ovarian cancer. To examine this potential bias, a retrospective review of 315 patient and family charts was conducted by one familial cancer clinic in Toronto, Canada. Referral letters, risk estimates, and family histories were analyzed to identify significant differences between patients referred with maternal and paternal family histories. It was determined that patients are approximately five times more likely to be referred with a maternal family history of breast and/or ovarian cancer as compared to those with a paternal family history (p = <.0001). Individuals with a paternal family history were found to have a different, and higher, pattern of risk estimates (p = .00064). No significant difference was seen between the type of referrals sent by general practitioners, oncologists, and gynecologists. Recommendations to increase the awareness of paternal family history in assessing cancer risk are provided.     

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   

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.     

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.     

An Internal Performance Assessment of CancerGene Connect: An Electronic Tool to Streamline,Measure and Improve the Genetic Counseling Process

CancerGene Connect (CGC) is a web-based program that combines the collection of family and medical history, cancer risk assessment, psychosocial assessment, report templates, a result tracking system, and a patient follow up system. The performance of CGC was assessed in several ways: pre-appointment completion data analyzed for demographic and health variables; a time study to assess overall time per case and to compare the data entry by the genetic counselor compared to the patient, and a measured quality assessment of the program via observation and interview of patients. Prior to their appointment, 52.3 % of 2,414 patients completed the online patient questionnaire section of CGC. There were significant differences in completion rates among racial and ethnic groups. County hospital patients were less likely to complete the questionnaire than insured patients (p?p?CGC. CGC reduces genetic counselor time by approximately 14–46 % compared to average time per case using traditional risk assessment and documentation methods previously reported. All surveyed users felt the questionnaire was easy to understand. CGC is an effective tool that streamlines workflow, and provides a standardized data collection tool that can be used to evaluate and improve the genetic counseling process.     

Evaluation of Breast Cancer Patients with Genetic Risk in a University Hospital: Before and After the Implementation of a Heredofamilial Cancer Unit

The identification of patients at risk for breast cancer by genetic testing has proven to reduce breast cancer mortality. In 2010, due to a lack of systematization in hereditary cancer assistance in our center, we implemented a multidisciplinary Heredofamilial Cancer Unit (HFCU). We analyze if the HFCU improved the rates of referrals and preventive management of breast cancer patients with genetic risk. We retrospectively compared family history records, referrals of high-risk patients to genetic counseling, and detection and management of patients with BRCA1/2 mutations in two cohorts of breast cancer patients diagnosed before (first period: 2007–2010) and after the creation of the HFCU (second period: 2010–2013). In the first period, 893 patients were included, and 902 were included in the second. Due to the inability to establish their genetic risk, 142 patients (15.9%) vs. 70 (7.8%) were excluded from analysis (p?<?0.001). Among the evaluable patients, 194 (25.8%) vs. 223 (26.8%) fulfilled one or more risk criteria (p?=?0.65). Family history documentation in patient’s medical records (92.4 vs. 97.8%, p?<?0.001) and referral rate (26.3 vs. 52%, p?<?0.0001) significantly increased in the second period. Eight BRCA1/2 mutations were detected among patients referred in the first period and 17 among those referred to the HFCU. The rate of preventive surgeries in patients with BRCA mutations significantly increased in the second period (25 vs. 76.5%, p?=?0.03). In conclusion, there was a clear improvement in family history records, referrals, and preventive surgeries in breast cancer patients with genetic risk after the implementation of the HFCU.     

Risk Reduction Behaviors and Provider Communication Following Genetic Counseling and BRCA1 Mutation Testing in an African American Kindred

Little is known about the impact of cancer genetic counseling and testing on health behaviors in racial and ethnic subgroups. This prospective observational study examined use of risk reduction strategies following BRCA1 counseling and testing. Participants were female members of an African American kindred who received genetic education, counseling and testing (n = 40) and completed a 1-year follow-up interview. Mutation carriers were more likely to opt for breast (100%, 7/7) and ovarian (25%; 1 of 4) cancer surveillance than prophylactic surgery. Following genetic counseling, 71% (5/7) of the BRCA1 carriers who opted for surveillance reported having a mammogram within the year following receipt of their genetic test results. Ovarian cancer screening among mutation carriers increased from 0% at baseline to 25% (one of four) at 1 year. Compared to noncarriers (23%, 7/30), carriers (70%, 7/10) were more likely to discuss their BRCA1 test results with their primary health care providers. Surveillance for breast cancer was preferred to prophylactic surgery and chemoprevention as a way to reduce risk for these cancers. Our data indicate that patient-provider communication about BRCA1 test results is suboptimal.     

Men’s Decision-Making About Predictive <Emphasis Type="Italic">BRCA1/2</Emphasis> Testing: The Role of Family

Men who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. Male carriers may be at increased risk of breast and prostate cancers. Relatively little is known about at-risk men’s decision-making about BRCA1/2 testing. This qualitative study explores the influences on male patients’ genetic test decisions. Twenty-nine in-depth interviews were undertaken with both carrier and noncarrier men and immediate family members (17 male patients, 8 female partners, and 4 adult children). These explored family members’ experiences of cancer and genetic testing, decision-making about testing, family support, communication of test results within the family, risk perception and risk management. Implicit influences on men’s testing decisions such as familial obligations are examined. The extent to which other family members—partners and adult children—were involved in testing decisions is also described. It is demonstrated that mothers of potential mutation carriers not only perceive themselves as having a right to be involved in making this decision, but also were perceived by their male partners as having a legitimate role to play in decision-making. There was evidence that (adult) children were excluded from the decision-making, and some expressed resentment about this. The implications of these findings for the practice of genetic counseling are discussed.     

Prospective Study on the Determinants of Repeat Attendance and Attendance Patterns in Breast Cancer Screening Using the Theory of Planned Behaviour

This prospective study, using the Theory of Planned Behaviour (TPB) as a theoretical framework, was carried out to identify the determinants of repeat attendance and attendance patterns in organised breast screening. A group of 2657 women filled out a baseline questionnaire, approximately 8 weeks after having been invited for an initial screening in the Dutch Breast Cancer Screening Programme. Data on actual attendance in second and third screening round were subsequently collected. Personal variables such as family history of breast cancer, breast cancer in someone close and fear of breast cancer were not related to repeat attendance. The TPB variables could explain approximately 17% of the variance in attendance in the second and third round. Maintenance behaviour (consistent attendance vs. dropout) was related to the TPB variables, but the amount of variance explained was only 6%. Initiation of behaviour (consistent refusal vs. delayed attendance) also was related to TPB variables, with a substantially higher amount of explained variance than with maintenance behaviour. Results indicate that the TPB variables are more related to the initiation of screening behaviour than to the maintenance of screening behaviour. Implications of these findings for breast cancer screening are discussed.     

Cancer Genetics Service Interest in Women with a Limited Family History of Breast Cancer

Women with a limited family history of breast cancer may be interested in cancer genetics information although their objective risk of breast cancer may not indicate routine referral to cancer genetics services. This study examined factors related to interest and use of cancer genetics services in a community sample of women with a limited family history of breast cancer (N = 187) who had no previous contact with cancer genetics services. Participants provided demographic information and ratings of perceived risk, cancer distress, attitudes, and intentions to initiate cancer genetics services. Participants were given information about a cancer genetics clinic that served women having concerns about their breast cancer risk. Women were contacted within 6 weeks and 8 months following their study appointment. Six weeks following their study appointment, 25% of women had initiated cancer genetics services. Eight months following their study appointment, 18% of women reported having completed a cancer genetics service appointment. Baseline intentions independently predicted both initiation at 6 weeks and appointment at 8 months. Cancer distress was positively associated with cancer genetics service initiation and appointment. Results suggest that some women with a limited family history of breast cancer are interested in seeking out cancer genetics information. Women with a limited family history of breast cancer may benefit from the availability of cancer genetics information provided through primary healthcare settings.     

Testing Theoretical Explanations of Intention to Seek Care for a Breast Cancer Symptom1

The purpose of this research was to test theoretical explanations of intention to seek care promptly for a breast cancer symptom. Psychosocial variables (affect, expectations, values, and norms), habit, and facilitating conditions (e.g., insurance) regarding care seeking were proposed to influence intention to seek care promptly. Whether psychosocial variables and habit influenced intention directly or in interaction with facilitating conditions remained unclear. Other variables (i.e., clinical and demographic) were proposed to influence intention by mediation through the theoretical variables. Community-dwelling women without history of breast cancer (N= 99) responded to a questionnaire to assess study variables. In a hierarchical set regression, intention was first regressed on psychosocial variables, habit, and full insurance coverage for care, then on terms representing interactions of insurance coverage with psychosocial variables and habit, and lastly on clinical and demographic variables. Findings revealed that (a) anxiety (measure of affect), utility, (the product of expectations and values), and habit were related to intention, (b) having full insurance coverage did not moderate these relationships, and (c) after controlling for theoretical variables, family history of breast cancer was related inversely to intention. Implications for theory, research, and practice are delineated.     

Knowledge and Beliefs about Bulimia Nervosa and its Treatment: A Comparative Study of Three Disciplines

Poor Mental Health Literacy (MHL), i.e. knowledge and beliefs about bulimia nervosa (BN), among health professionals may contribute to low rates of recognition and less optimal management. The aim of this study was to investigate the BN-MHL of health professionals. A total of 534 professionals selected randomly from Internet based lists were surveyed with a MHL questionnaire regarding a fictional vignette of a woman with BN. One hundred and thirty-six dieticians, 68 psychologists and 97 counselors, total 56% (n = 301) responded. The majority of respondents indicated the woman in the vignette suffered from BN (49%) or an eating disorder (20%) and endorsed evidenced based approaches. On post hoc between group analyses there was a trend (p = .02) for dieticians and psychologists to be more likely than counselors to accurately identify the diagnosis of BN. Dieticians and psychologists were also more likely than counselors to endorse a psychologist as the most helpful treatment provider (p<.001) and to be more likely to endorse cognitive behavioral therapy as the most helpful treatment (p<.001). These results indicate a need for greater training and support for non specialist primary care health professionals.     

Incorporating a Psychological Counselor in a Cancer Risk Assessment Program: Necessity, Acceptability, and Potential Roles

Evidence suggests that cancer risk assessment may be associated with increased psychological distress. This exploratory study assessed the necessity and acceptability of incorporating psychological counseling into routine clinic procedures at a cancer risk program. Following a visit to a university-based cancer risk clinic, patients (N = 102) completed an anonymous self-report instrument. Participants reported experiencing current stress and anxiety (41%), depression (29%), and suicidal ideation (2%). Patients with a history of cancer were more likely to be experiencing current emotional difficulties. Sixty-nine percent of the participants found the visit with the psychological counselor to be helpful, while 41% of the participants reported interest in follow-up psychological services. Interest in receiving future psychological services was positively correlated with levels of anxiety, depression, and cancer worry. This pilot study demonstrates the acceptability and potential role for psychological counselors in increasing adjustment in high-risk patients undergoing genetic counseling for inherited cancers.     

Coping among african-american,hispanic, and non-hispanic white women recently treated for early stage breast cancer

Relatively little is known about how members of minority groups cope with experiences such as diagnosis and treatment of breast cancer – in particular, whether coping patterns among minorities differ from that of the majority. This study adds to the existing knowledge base using a cross-sectional sample of middle-class African-American (n = 26), Hispanic (n = 59), and non-Hispanic White women (n = 151) who had been treated for early stage breast cancer in the past year. We tested for differences in coping responses per se and also for the possibility that coping would relate to distress differently in different groups. There were only two differences in coping (controlling for medical variables, education, and distress): compared to non-Hispanic White women, the other two groups both reported using humor-based coping less, and religion-based coping more. There was one difference in how coping related to distress: venting related more strongly to elevated distress among Hispanic than among non-Hispanics. Discussion centers on a growing consensus on ethnic differences in religious and humor-based coping, and on the relative absence of other coping differences among these populations.