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.     

Self-Reported Questionnaire Detects Family History of Cancer in a Pancreatic Cancer Screening Program

Pancreatic ductal adenocarcinoma (PDAC) is a leading cause of cancer death; approximately 5–10% of PDAC is hereditary. Self-administered health history questionnaires (HHQs) may provide a low-cost method to detail family history (FH) of malignancy. Pancreas Center patients were asked to enroll in a registry; 149 with PDAC completed a HHQ which included FH data. Patients with FH of PDAC, or concern for inherited PDAC syndrome, were separately evaluated in a Prevention Program and additionally met with a genetic counselor (GC) to assess PDAC risk (n?=?61). FH obtained through GC and HHQ were compared using Wilcoxon signed-rank sum and generalized linear mixed models with Poisson distribution. Agreement between GC and HHQ risk-assessment was assessed using kappa (κ) statistic. In the Prevention Program, HHQ was as precise in detecting FH of cancer as the GC (all p?>?0.05). GC and HHQ demonstrated substantial agreement in risk-stratification of the Prevention Program cohort (κ?=?0.73, 95% CI 0.59–0.87.) The sensitivity of the HHQ to detect a patient at elevated risk (i.e., moderate- or high-risk) of PDAC, compared to GC, was 82.9% (95% CI 67.3–92.3%) with a specificity of 95% (95% CI 73.1–99.7%). However, seven patients who were classified as average-risk by the HHQ were found to be at an elevated-risk of PDAC by the GC. In the PDAC cohort, 30/149 (20.1%) reported at least one first-degree relative (FDR) with PDAC. The limited sensitivity of the HHQ to detect patients at elevated risk of PDAC in the Prevention Program cohort suggests that a GC adds value in risk-assessment in this population. The HHQ may offer an opportunity to identify high-risk patients in a PDAC population.     

Evaluation of a Heredofamilial Cancer Unit in Increasing Family History Collection and Genetic Counseling Referrals Among Spanish Oncologists at a University Hospital

A comprehensive family history is essential to identify patients at risk for hereditary cancer who could benefit from genetic counseling (GC). In a previous study, we observed a low occurrence of family history record (FHR) collection rate and GC referral among oncologists at our institution. The present work analyzes whether the implementation of a heredofamilial cancer unit (HFCU) would improve these parameters. We retrospectively compared the FHR rate in clinical records, National Cancer Institute (NCI) general criteria for hereditary cancer suspicion, GC referrals and FHR quality in two cohorts: cohort 1 (patients diagnosed before HFCU creation) and cohort 2 (after HFCU creation). Of 1,175 patients (590 cohort 1 and 585 cohort 2), FHRs were consigned in 27.3 % and 52.5 % of patients, respectively (p?<?0.001). The GC referral of patients with any NCI criterion was 13.6 % xin cohort 1 vs. 40.5 % in cohort 2 (p?<?0.001). FHR quality improved in terms of the total number of relatives (164 vs. 314, p?=?0.1, N.S.) and number of healthy relatives consigned (80 vs. 191, p?<?0.01). Nine mutations (6 BRCA, 1 MEN1, 2 Lynch), 4 unknown significance variants (all in BRCA) and 2 with no mutation were identified among patients referred from cohort 2. We conclude that the creation of a heredofamilial cancer unit has changed both FHR and GC referrals among oncologists at our institution, although continuous educational efforts are required.     

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.     

Family History of Pancreatic Cancer in a High-Risk Cancer Clinic: Implications for Risk Assessment

Detailed family history is a critical element of cancer risk assessment. The relative importance of pancreatic cancer (PC) in a close family member, particularly in hereditary breast-ovarian syndrome (HBOS), is not clearly defined. We use a case-control design to investigate the importance of a family history of PC to cancer risk assessment. Case and control families were identified from the University of Chicago Cancer Risk database (1994–2005). Pedigrees were analyzed for personal and familial clinical cancer data. Cases included all new subjects (probands) reporting a close relative (first or second degree) with PC. Controls included the probands enrolled in the database immediately prior to and subsequent to each case (i.e. two controls for each case). From 1,231 pedigrees, 103 PC were reported by the proband in 87 unique families. Many probands reported multiple or early-onset PCs: one third (28/87) of case families met criteria for a familial PC syndrome [≥2 first-degree relatives with PC (n = 10) or PC diagnosed ≤50 (n = 18)]. Of these families, the majority (75%) concurrently met criteria suggestive of hereditary breast-ovarian syndrome (HBOS). Because of a family history consistent with HBOS, at least one individual from each of 29 case and 55 control families underwent genetic testing for BRCA1/2. Among case families, 19 of 29 (66%) had a BRCA1/2 mutation compared with 16 of 55 (29%) controls. A significant association between family history of PC and a BRCA1/2 mutation was seen (OR 3.78, 1.32–10.9). This point estimate was strengthened but less precise in the non-Ashkenazi Jewish subset of tested families (OR 6.03, 1.68–22.14). In a high-risk population, a family history of PC, though infrequently reported, is nonetheless clinically meaningful. In risk assessment for HBOS, identifying a family history of PC should strongly raise the suspicion of an unrecognized BRCA1/2 mutation.     

Millon Behavioral Medicine Diagnostic (MBMD) Predicts Health-Related Quality of Life (HrQoL) Over Time Among Men Treated for Localized Prostate Cancer

Prostate cancer treatment presents multiple challenges that can negatively affect health-related quality of life (HrQoL), and that can be further compromised by maladaptive personality styles and psychological adjustment difficulties. This study examined the utility of a comprehensive psychosocial screening tool to identify psychosocial traits that prospectively predict HrQoL status among men treated for localized prostate cancer. The Millon Behavioral Medicine Diagnostic (MBMD) was administered to 66 men (M age = 68 years, 59% White) treated by either radical prostatectomy or radiotherapy along with standard measures of general and prostate-cancer-specific quality of life assessed at a 12-month follow-up. Higher scores on both summary MBMD Management Guides (Adjustment Difficulties and Psych Referral) and higher scores on personality styles characterized by avoidance, dependency, depression, passive aggressiveness, and self-denigration predicted lower HrQoL (β range = –.21 to –.50). Additionally, higher scores on the MBMD Depression, Tension-Anxiety, and Future Pessimism scales predicted lower HrQoL. Finally, higher scores on the MBMD Intervention Fragility and Utilization Excess scale also consistently predicted poorer mental and physical health functioning over time. These results point to the utility of the MBMD to help screen for potential impairments in mental and physical health functioning in men undergoing treatment for prostate cancer.     

Cancer Survivorship: Religion in Meaning Making and Coping Among a Group of Black Prostate Cancer Patients in South Africa

Journal of Religion and Health - The purpose of the study was to explore the role of religion in meaning making and coping among a group of black patients receiving some form of prostate cancer...     

The Unmet Information and Support Needs of Women with a Family History of Breast Cancer: A Descriptive Survey

This study aims to survey the unmet support needs of women at increased risk of developing breast cancer. In total, 173 unaffected women with a family history of breast cancer completed a 28-item purposely-designed mailed survey. The majority of participants did not report a high level of unmet need for support. Receiving further information about cancer genetics was the most commonly reported area of unmet need. Only about 20% of participants reported a moderate to high degree of interest in attending a hypothetical support group. However, a higher degree of interest was expressed in internet-based information and supportive interventions. Amongst those interested in attending a support group, discussion, and receiving further information were the most preferred activities. Higher levels of unmet support needs were significantly associated with interest in attending groups. No demographic variables were found to predict interest in attending a support group. Implications for those considering establishing support groups are discussed.     

Misperception Among Gay Men of the Risk for AIDS Associated with Their Sexual Behavior1

Until a vaccine against AIDS is developed, the most effective strategy for preventing the spread of the disease among gay men, the largest risk group, is to persuade them to abstain from particular kinds of sexual practices implicated in the transmission of the AIDS virus. Motivation to comply with risk-reduction guidelines, however, is dependent in part on a realistic appraisal of the degree of risk associated with one's sexual practices. Data are presented from 160 asymptomatic gay men. Their subjective assessment of the riskiness of their sexual behavior is compared to an objective assessment of the riskiness of their sexual practices. Factors associated with a tendency to underestimate the riskiness of one's practices are examined. Finally, the implications of the findings for public health education efforts among gay men are discussed.     

A Psycho-Educational Intervention for People with a Family History of Depression: Pilot Results

We developed and pilot-tested the first online psycho-educational intervention that specifically targets people with a family history of depression (‘LINKS’). LINKS provides genetic risk information and evidence-rated information on preventive strategies for depression and incorporates a risk assessment tool and several videos using professional actors. LINKS was pilot-tested in the general practitioner (GP) setting. The patient sample included people with a family history of at least one first-degree relative (FDR) with major depressive disorder (MDD) or bipolar disorder (BD). Patients attending participating GP practices were invited to enroll in the study by letter from their GP. Patients who self-identified as having at least one first-degree relative (FDR) with MDD or BD were eligible. Patients completed questionnaires, pre-post viewing LINKS, with measures assessing satisfaction, relevance, emotional impact and perceived improvement of understanding. Six GP practices participated, and 24 patients completed both questionnaires. Of these, all reported that they were satisfied or very satisfied with LINKS, and 74 % reported that LINKS met their expectations, and 21 % that it exceeded their expectations. LINKS was judged highly acceptable by this sample of GP attendees, and results indicate that an assessment of its effectiveness in a larger controlled trial is warranted.     

Testing the Efficacy of Family Health-Model of REBT on Family Values and Quality of Family Life Among Parents of Children with Visual Impairment

Journal of Rational-Emotive & Cognitive-Behavior Therapy - The high rate of negative thinking in family circles due to the presence of children with visual impairment has grossly affects the...     

Reading Between the Lines: A Comparison of Responders and Non-responders to a Family History Questionnaire and Implications for Cancer Genetic Counselling

Family history questionnaires (FHQ) are useful tools for cancer genetic counseling, providing an informational basis for pedigree construction and individualized cancer risk assessment. Reported return rates of mailed FHQs amongst familial cancer clinics that utilize them are lower than desired however, and it is unknown whether patients perceive required completion of a FHQ as a barrier to access of cancer genetics services. This study critically evaluated the use of a mailed FHQ for all routine new patient referrals to a single hereditary cancer clinic in Quebec, Canada. Reasons for response/non-response to a FHQ and the effect of administration of a questionnaire on patients’ self-reported level of motivation to pursue genetic counseling, were examined. Of 112 eligible individuals referred during the study period, 86 completed a semi-structured telephone survey; of these, 45% had returned the mailed FHQ prior to the telephone survey (Responders) and 55% had not (Non-responders). Overall, the majority of participants indicated a FHQ is an acceptable and understandable method of collecting family history information. Most prevalent reasons for not returning the FHQ were (bad) timing (56%), and difficulty accessing family history information (46%). Non-response was significantly associated with difficulty in asking relatives for the requested information (p = 0.011), and Non-responders cited fewer overall perceived benefits of cancer genetic counseling as compared with Responders (p < 0.0001). One quarter of Non-responders returned the mailed FHQ following administration of the telephone survey, suggesting implementation of a follow-up prompt is a cost-effective way to increase response.     

Investigation of the Use of a Family Health History Application in Genetic Counseling

The paper-based pedigree is the current standard for family health history (FHH) documentation in genetic counseling. Several tools for electronic capture of family health data have been developed to improve re-use and accessibility, data quality and standardization, ease of updating, and integration with electronic medical records. One such tool, the tablet-based Proband application, provides a flexible approach to data capture in dynamic and diverse clinical settings. This study compared Proband FHH collection to paper-based methods and investigated the usability of Proband in a clinical setting. After one use by 23 genetic counselors and students, Proband had 91% accuracy with a FHH audio scenario, which was significantly less (p?<?0.001) than paper’s 96% accuracy. These differences were attributed to incorrect or missing ages of grandparents (p?<?0.001) and great-aunts/uncles (p?=?0.012) and missing documentation of consanguinity (p?<?0.001). Possible explanations for these differences include greater experience with paper FHH documentation and pre-populated prompts for consanguinity on the paper template used. Proband’s perceived usability increased with use, with individual System Usability Scores increasing between first and last use (p?=?0.033). We conclude that tools for dynamic, provider-driven FHH documentation such as Proband show promise for improving risk assessment accuracy and quality patient care.     

Amyotrophic Lateral Sclerosis in a Patient with a Family History of Huntington Disease: Genetic Counseling Challenges

Amyotrophic lateral sclerosis (ALS) and Huntington disease (HD) are generally considered to be distinct and easily differentiated neurologic conditions. However, there are case reports of the co-occurrence of ALS with HD. We present a 57-year-old male with a clinical diagnosis of sporadic ALS in the context of a family history of HD. This case adds to the limited literature regarding individuals with a family history of HD who present with features of ALS. There were several genetic counseling challenges in counseling this patient including the diagnostic consideration of two fatal conditions, complex risk information, the personal and familial implications, and the patient’s inability to communicate verbally or through writing due to disease progression. DNA banking effectively preserved the right of our patient and his wife not to learn his HD genetic status during a stressful time of disease progression while providing the option for family members to learn this information in the future if desired. We present lessons learned and considerations for other clinical genetics professionals who are presented with similar challenging issues.     

Fear of Intimacy as a Mediator of the Internalized Heterosexism-Relationship Quality Link Among Men in Same-Sex Relationships

This study examined the relationship between internalized heterosexism (also known as internalized homophobia) and fear of intimacy and relationship quality among 88 men in a same-sex romantic relationship. Findings revealed that internalized heterosexism was positively correlated with fear of intimacy (r = .49) and negatively correlated with relationship quality (r = ?.43). In addition, results indicated that fear of intimacy partially mediated the relationship between internalized heterosexism and relationship quality. That is, the data were consistent with the notion that internalized heterosexism leads to more fear of intimacy, which in turn leads to less relationship quality among sexual minority men. Finally, the variables in the model accounted for 28 % of the variance in relationship quality scores. Implications for future research and clinical practice are discussed.     

Stigma by Association Among Family Members of People with a Mental Illness: A Qualitative Analysis

People with mental illness are not the sole recipients of stigmatisation; their immediate family members may be subjected to stigma by association. Through semi‐structured interviews, we investigated experiences of stigma by association among 23 immediate family members of people with mental illness. Participants reported experiencing stigma by association from community members, mental health professionals, and civil servants. Familial relationship, co‐residence, and the gender of participants appeared to play a role in their stigma experiences; parents and spouses reported different manifestations of stigma by association than siblings and children, participants who lived together with their family member with mental illness reported increased experiences of stigma by association, and in contrast to male participants, female participants reported others thinking they are overprotective and as such perpetuated, maintained, or sustained their family members' mental illness. The relevance of these factors points to the need for tailored education and emotional support provision to family members of people with mental illness. Moreover, in‐service training for mental health professionals should include the development of relevant social skills that enable the recognition of familial relationships and roles, and family members' fears, concerns, and problems. Copyright © 2014 John Wiley & Sons, Ltd.     

Comprehension of Sexual Consent as a Key Factor in the Perpetration of Sexual Aggression Among College Men

The comprehension of sexual consent is a crucial factor in healthy sexual relationships. This study examined the connection between the understanding of sexual consent and perpetration of sexual aggression. We surveyed 217 heterosexual male college students (M age = 20.9 years) using measures of sexual aggression, comprehension of sexual consent, rape myth acceptance, conformity to masculine norms, peer support of abuse, and attachment to abusive peers. We tested models examining factors related to comprehension of consent and the extent to which comprehension of consent was related to perpetration of sexual aggression. Rape myth acceptance, peer support of abuse, and conformity to masculine norms were found to predict comprehension of consent, which mediated the relationship between the social and cognitive variables and sexual aggression.