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Purpose: Research suggests that cancer-related cognitive impairment (CRCI) can occur before breast cancer (BC) treatment. The limited extant evidence suggests the underlying mechanisms could be stress-related. Potential psychological and biological predictors of CRCI prior to any BC treatment were examined., Methods: 112 treatment-naïve women with BC and 67 healthy controls (HC) completed a neuropsychological test battery to assess cognitive impairment and a self-report battery to assess cognitive complaints, cancer-related stress, depressive and anxiety symptoms. Morning and evening cortisol and α-amylase were collected from saliva. Multilinear regressions were conducted., Results: Treatment-naïve BC patients were more frequently impaired in verbal memory and processing speed and reported more cognitive complaints (all p < .001) than HC. BC patients and HC did not differ in overall cognitive impairment (p = .21). Steeper α-amylase, lower cancer-related stress and younger age was associated with better overall cognitive function in treatment-naïve BC patients. Higher depressive symptoms predicted higher levels of cognitive complaints in BC patients., Conclusion: Overall, these findings suggest that stress plays a role in CRCI. This study is the first to associate α-amylase with cognitive function in cancer patients, informing future research. The findings on impairment in processing speed and verbal memory among treatment-naïve BC highlight the need to screen for such impairments among BC patients and indicate that future studies on CRCI should include baseline assessments prior to BC treatment. If replicated, these findings could inform the development and testing of appropriate interventions to decrease CRCI among cancer patients., Clinical Trials Registration Number: NCT04418856, date of registration: 06.05.2020., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objective: Exposure to adverse childhood experiences (ACEs) is a significant predictor for physical and mental health problems later in life, especially during the perinatal period. Prenatal common mental disorders (PCMDs) are well-established as a risk for obstetric interventions but knowledge on combined effects of multiple psychosocial risk factors is sparse. We aim to examine a comprehensive model of ACEs and PCMDs as risk factors for poor delivery and neonatal outcomes., Method: With structural equation modeling, we examined direct and indirect pathways between psychosocial risk and delivery and neonatal outcomes in a prospective cohort from pregnancy to birth in Iceland., Results: Exposure to ACEs increased risk of PCMDs [β = 0.538, p < .001, CI: 0.195-1.154] and preterm delivery [β = 0.768, p < .05, CI: 0.279-1.007)]. An indirect association was found between ACEs and increased risk of non-spontaneous delivery [β = 0.054, p < .05, CI: 0.004-0.152], mediated by PCMDs. Identical findings were observed for ACEs subcategories., Conclusion: ACEs are strong predictors for mental health problems during pregnancy. Both ACEs and PCMDs diagnosis are associated with operative delivery interventions and neonatal outcomes. Findings underscore the importance of identifying high-risk women and interventions aimed at decreasing psychosocial risk during the prenatal period., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023. Published by Elsevier Inc.)

Background: Poor mental health in the first year of the COVID-19 pandemic has been well documented in adolescents; however, less is known about the longer-term effect of the pandemic. We aimed to examine adolescent mental health and substance use as well as covariates associated with these outcomes 1 year or more into the pandemic., Methods: A nationwide sample of adolescents aged 13-18 years enrolled in school in Iceland were invited to complete surveys administered during October-November or February-March, 2018, October-November, 2020, February-March or October-November, 2021, and February-March 2022. The survey was in Icelandic for all administrations and offered to adolescents aged 13-15 years in English in 2020 and 2022 and in Polish in 2022. Surveys assessed depressive symptoms (Symptom Checklist-90); mental wellbeing (Short Warwick Edinburgh Mental Wellbeing Scale); and the frequency of cigarette smoking, e-cigarette use, and alcohol intoxication. Covariates comprised age, gender, and migration status as determined by language spoken at home, level of social restrictions based on residency, parental social support, and sleep duration (≥8 h nightly). Weighted mixed-effect models were used to determine the effect of time and the covariates on mental health and substance use. The main outcomes were assessed in all participants with more than 80% of the necessary data, and multiple imputation was used to handle missing data. Bonferroni corrections were used to adjust for multiple testing and analyses were considered significant at a p value of <0·0017., Findings: 64 071 responses were submitted and analysed between 2018 and 2022. Elevated depressive symptoms and worsened mental wellbeing across girls and boys aged 13-18 years were observed to have been maintained up to 2 years into the pandemic (p>0·0017). Alcohol intoxication initially decreased during the pandemic but increased again as social restrictions eased (p<0·0001). No changes were observed in cigarette smoking and e-cigarette use during the COVID-19 pandemic. Higher levels of parental social support and an average sleep duration of 8 h or more per night were associated with mental health better outcomes and less substance use (p<0·0001). Social restrictions and migration background were inconsistently associated with the outcomes., Interpretation: Population-level prevention targeting adolescent depressive symptoms should be prioritised in health policy in the wake of COVID-19., Funding: Icelandic Research Fund., Competing Interests: Declaration of interests IET is a staff member at Planet Youth, a youth substance use prevention service organisation that is distributed globally through sale of the Planet Youth Guidance Program, which is based on the Icelandic Prevention Model, from which she receives a salary. All other authors declare no competing interests., (Copyright © 2023 Elsevier Ltd. All rights reserved.)

In this study an interactive decision aid (DA) for men diagnosed with localized prostate cancer was adapted, extended and pre-tested. The DA's prototype was based on a literature review and other empirically tested DAs. Semi-structured interviews with 12 men (age 65-80) diagnosed with localized prostate cancer were conducted to get feedback on content, usability, and the DA's layout. The interviews were analyzed using thematic analysis and themes were identified using deductive and inductive coding. Participants found the accessibility of the information and the explicit values clarification tool helpful. Four themes were identified: (1) usability and design, (2) content and knowledge, (3) deciding factors of decision-making, and (4) social support. Participants valued receiving extensive and realistic information on surgery/radiation therapy side effects and getting unbiased presentations of treatment options. Following the thematic analysis, the DA was revised and tested in a survey among 11 newly diagnosed prostate cancer patients (age 60-74). The participants valued the DA and found it helpful when making a treatment decision, and all reported that they would recommend it to others making a prostate cancer treatment decision. The DA is currently being tested in a randomized clinical trial (RCT). This is the first DA developed for prostate cancer patients in Iceland and if the results of the RCT show that it is more effective than standard care in assisting newly diagnosed patients with their treatment decision, the DA can be easily translated and adapted to cultures similar to Iceland such as the Nordic countries.

Patients who have undergone hematopoietic stem cell transplant (HSCT) may experience cognitive impairment that can persist after treatment. Several studies have shown that bright light therapy may improve cognition, potentially due to its effects on the circadian system via brain regions that respond preferentially to light. In this double-blind randomized controlled trial, the efficacy of bright light therapy on cognition was examined in HSCT survivors. Forty-seven HSCT survivors at an urban hospital in the United States were screened for mild cognitive impairment, randomized to either bright white light (BWL) or comparison dim red light (DRL) conditions using a block randomization approach, and instructed to use their assigned light box every morning upon awakening for 30 min for 4 weeks. Assessments occurred at baseline, the end of the second week of the intervention, the end of the intervention, and at follow-up (8 weeks later). The primary outcome was objective cognitive function as measured by a global composite score on neuropsychological tests. Secondary outcomes included cognitive performance in individual domains, self-reported cognitive function, fatigue, sleep and sleep quality, and circadian rhythm robustness. Repeated-measures linear mixed models for both objective and self-reported cognitive function indicated significant main effects for time ( p s < 0.05) suggesting significant improvements in both conditions over time. Time by light condition interaction effects were not significant. Models focused on secondary outcomes yielded no significant effects. Both BWL and DRL groups demonstrated significant improvements in objective cognitive and self-reported cognitive function over time, but there was no hypothesized effect of BWL over DRL nor associations with circadian rhythm robustness. Therapeutic effects of both light conditions, practice effects, and/or placebo effects may account for the findings. Trial registration: ClinicalTrials.gov Identifier: NCT02677987 (9 February 2016).

Prostate-specific antigen (PSA) testing for asymptomatic men is neither encouraged nor discouraged in most countries; however, shared decision-making is emphasized prior to PSA testing. The objective of this study was to examine to what extent Icelandic men receive information about the pros and cons of PSA testing. Furthermore, to explore if patient-provider communication about pros and cons of PSA testing has improved in the last decade during which time more emphasis has been placed on shared decision-making. All Icelandic men diagnosed with prostate cancer in the years 2015 to 2020 were invited to participate, and a total of 471 out of 1002 men participated (response rate 47.0%). Participants' age ranged from 51 to 95 years ( M = 71.9, SD = 7.3). Only half of the men received information about the pros and cons of PSA testing, a third did not receive any information prior to testing and, alarmingly, 22.2% of the men did not even know that they were being tested. A majority of the participants lacked knowledge about the testing with half of the men reporting that they had no knowledge about pros and cons of PSA testing prior to testing. The findings have major public health relevance as they indicate that information provided prior to PSA testing continue to be deficient and that there is a pressing need for interventions that educate men about the benefits and limitations of PSA testing before men undergo medical procedures that can seriously affect their quality of life.

Objective: As germline genetic referral becomes increasingly routine as part of the care of newly diagnosed breast cancer patients, it is important to understand the psychosocial impact of genetic counseling at the time of diagnosis. We examined the psychosocial and quality of life (QOL) impact of providing proactive rapid genetic counseling and testing (RGCT) in the immediate aftermath of a breast cancer diagnosis., Methods: We randomized 330 patients in a 2:1 ratio to proactive rapid genetic counseling (RGCT; N = 222) versus usual care (UC; N = 108). Participants completed a baseline telephone survey before randomization and definitive surgery and a follow-up survey at 1-month post-randomization. We evaluated the impact of RGCT versus UC on breast cancer genetic knowledge, distress, QOL, and decisional conflict. Given that 43% of UC participants and 86% of RGCT participants completed genetic counseling prior to the 1-month assessment, we also evaluated the impact of genetic counseling participation over and above group assignment., Results: The RGCT intervention led to increased breast cancer genetic knowledge relative to UC but did not differentially impact other study outcomes. Across groups patients who participated in genetic counseling had significantly increased knowledge and improved QOL compared to those who did not participate in genetic counseling., Conclusions: While prior research has documented the impact of genetic counseling and testing on surgical decisions, these results confirm that participation in genetic counseling at the time of diagnosis can yield improvements in knowledge and QOL in the short-term., (© 2021 John Wiley & Sons Ltd.)

Purpose: To evaluate the short- and long-term effects of light therapy on fatigue (primary outcome) and sleep quality, depression, anxiety, quality of life, and circadian rhythms (secondary outcomes) in survivors of (non-)Hodgkin lymphoma presenting with chronic cancer-related fatigue., Methods: We randomly assigned 166 survivors (mean survival 13 years) to a bright white light intervention (BWL) or dim white light comparison (DWL) group. Measurements were completed at baseline (T0), post-intervention (T1), at three (T2), and nine (T3) months follow-up. A mixed-effect modeling approach was used to compare linear and non-linear effects of time between groups., Results: There were no significant differences between BWL and DWL in the reduction in fatigue over time. Both BWL and DWL significantly ( p < 0.001) improved fatigue levels during the intervention followed by a slight reduction in this effect during follow-up (ES T0-T1 = -0.71; ES T1-T3 = 0.15). Similar results were found for depression, sleep quality, and some aspects of quality of life. Light therapy had no effect on circadian rhythms., Conclusions: BWL was not superior in reducing fatigue compared to DWL in HL and DLBCL survivors. Remarkably, the total sample showed clinically relevant and persistent improvements on fatigue not commonly seen in longitudinal observational studies in these survivors.

Background: Adolescence represents a crucial developmental period in shaping mental health trajectories. In this study, we investigated the effect of the COVID-19 pandemic on mental health and substance use during this sensitive developmental stage., Methods: In this longitudinal, population-based study, surveys were administered to a nationwide sample of 13-18-year-olds in Iceland in October or February in 2016 and 2018, and in October, 2020 (during the COVID-19 pandemic). The surveys assessed depressive symptoms with the Symptom Checklist-90, mental wellbeing with the Short Warwick Edinburgh Mental Wellbeing Scale, and the frequency of cigarette smoking, e-cigarette use, and alcohol intoxication. Demographic data were collected, which included language spoken at home although not ethnicity data. We used mixed effects models to study the effect of gender, age, and survey year on trends in mental health outcomes., Findings: 59 701 survey responses were included; response rates ranged from 63% to 86%. An increase in depressive symptoms (β 0·57, 95% CI 0·53 to 0·60) and worsened mental wellbeing (β -0·46, 95% CI -0·49 to -0·42) were observed across all age groups during the pandemic compared with same-aged peers before COVID-19. These outcomes were significantly worse in adolescent girls compared with boys (β 4·16, 95% CI 4·05 to 4·28, and β -1·13, 95% CI -1·23 to -1·03, respectively). Cigarette smoking (OR 2·61, 95% CI 2·59 to 2·66), e-cigarette use (OR 2·61, 95% CI 2·59 to 2·64), and alcohol intoxication (OR 2·59, 95% CI 2·56 to 2·64) declined among 15-18-year-olds during COVID-19, with no similar gender differences., Interpretation: Our results suggest that COVID-19 has significantly impaired adolescent mental health. However, the decrease observed in substance use during the pandemic might be an unintended benefit of isolation, and might serve as a protective factor against future substance use disorders and dependence. Population-level prevention efforts, especially for girls, are warranted., Funding: Icelandic Research Fund., Translation: For the Icelandic translation of the abstract see Supplementary Materials section., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Background: Differential effects of the coronavirus SARS-CoV-2 (COVID-19) pandemic and associated public restrictions on adolescent girls and boys are emerging but have not been elucidated. This study examined gender differences across broad indicators of adolescent well-being during the COVID-19 pandemic in Iceland, and explored potential explanations for these differences., Methods: In total, 523 youth (56.5% girls) born in Iceland in 2004 completed measures on mental health problems (depressive symptoms, anger and suicide attempts) and measures designed for this study to assess broad indicators of adolescent well-being (e.g., day-to-day life, academic performance, family and peer relationships, and mental and physical health) and behavioral changes during the COVID-19 pandemic. Mental health problems during the pandemic were compared to expected scores based on nationwide ratings of same-aged peers in 2018., Results: Although both boys and girls appeared affected, girls reported a greater negative impact across all the broad indicators of well-being and behavioral change during COVID-19 than boys, and their depressive symptoms were above and beyond the expected nationwide scores ( t (1514) = 4.80, p <  .001, Cohen's d  = 0.315). Higher depressive symptoms were associated with increased passive social media use and decreased connecting with family members via telephone or social media among girls, and decreased sleeping and increased online gaming alone among boys. Concern about others contracting COVID-19, changes in daily and school routines, and not seeing friends in person were among the primary contributors to poor mental health identified by youth, particularly girls., Conclusions: Adolescents were broadly negatively affected by the COVID-19 pandemic and accompanying restrictions; however, this negative impact was more pronounced in girls. The findings suggest that a steady routine and remaining socially connected may help youth cope with the uncertainty and social restrictions associated with a pandemic. Moreover, healthcare providers, teachers, and other professionals should pay close attention to depressive symptoms among girls during a pandemic., Competing Interests: The authors declare that there are no conflict of interests., (© 2021 The Authors. JCPP Advances published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.)

Background and Objectives: Transdiagnostic mechanisms of change (txMOC) specific to cognitive behaviour therapy are poorly understood. Salkovskis (1996) proposed one such mechanism in terms of the shift towards an alternative, less negative view of their problems or cognitive flexibility. This hypothesis has been described as involving a shift in beliefs, from "theory A″ to "theory B". The objective of this research was to evaluate this hypothesis., Methods: Effectiveness of a novel txCBT and temporal changes in process and symptom measures were evaluated using a non-concurrent multiple baseline design and Tau-U calculations with thirteen participants (five with obsessive-compulsive disorder, two with panic disorder with agoraphobia and six with major depressive disorder). As a secondary analysis authors calculated Kendall's - Tau correlation between process and symptom measures, performed the Wilcoxon signed-rank test to assess treatment modules effect on negative thought and calculated Reliable change index (RCI)., Results: The txCBT was clearly effective for eight participants. The results varied dependent on the stimuli evaluated as negative or threatening. Level and trend of the ratings of belief in theory A followed the level and trend of symptom measures to a greater extent than the (inverse) level and trend of belief in theory B., Limitations: Only thirteen participants were recruited and evaluated., Conclusions: The results are consistent with the view that effective treatment may involve a txMOC characterized by the ability to shift from a relatively fixed negative view of their experience to a less negative psychologically focused alternative., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Purpose: Identifying and understanding modifiable risk and protective factors that can inform early detection and intervention to prevent adolescent emotional problems and harmful behaviours is among the most pressing modern-day public health challenges. This paper describes the rationale, objectives, methods, and anticipated outcomes of the LIFECOURSE study, a multi-level, bio-psychosocial prospective study designed to advance our understanding of factors that shape adolescent mental health and behaviour., Methods: Conducted by the Icelandic Centre for Social Research and Analysis at Reykjavik University, LIFECOURSE is a longitudinal population-based developmental study of Icelandic adolescents born in 2004. The study utilizes a comprehensive multi-informant assessment of individual, societal and biological factors measured across the lifespan. Data assembly and collection were conducted from 2016-2020 and utilize both retrospective and prospective data sources: (a) retrospective registry data assembled from seven national databases, (b) prospectively collected social surveys and (c) biomarker samples., Results: Of the 3914 eligible adolescents, 60.8% (n = 2378) provided informed parental consent and student assent to participate in the study, with approximately half of the participants being female (n = 1175, 49.4%) and the majority being born in the capital area (n = 1455; 61.2%). The coverage of available data from the national databases and participation in the social surveys ranged from 81.7 to 100%., Conclusions: Major gaps remain in our knowledge of how individual, societal and biological factors across the lifespan-from early life to adolescence-interact and shape the risk for emotional problems and harmful behaviours during adolescence. The LIFECOURSE study was designed to address this knowledge gap.

Cancer-related fatigue has been related to circadian disruptions and lower levels of sleep quality. However, it is unknown whether the circadian phase, which is associated with chronotype and timing of sleep, is related to fatigue after cancer. The aims of this study were to investigate the associations between (1) chronotype and cancer-related fatigue and (2) sleep quality and cancer-related fatigue. In this cross-sectional questionnaire study, 458 (non-)Hodgkin lymphoma survivors ( n = 231 female, mean age 49.7 years) completed a Visual Analogue Scale for fatigue (VAS-fatigue) from 0 ( no fatigue ) to 10 ( worst imaginable fatigue ), the Munich Chronotype Questionnaire (MCTQ), and the Pittsburgh Sleep Quality Index (PSQI) between October 2018 and July 2019. A hierarchical linear regression analysis was used to evaluate the associations between the dependent variable fatigue and chronotype (based on early, intermediate, or late average midsleep) in Model 1, and fatigue and sleep quality in Model 2. The results showed no indications for an association between chronotype and fatigue (all p values ≥ 0.50). There were associations between two (out of seven) aspects of sleep quality and fatigue: subjective sleep quality ( p < 0.001) and daily dysfunctioning ( p < 0.001). Therefore, it is more likely that fatigue is associated with self-reported sleep quality rather than with chronotype. However, experimental studies with objective, physiological data on circadian phase and sleep quality are necessary to confirm the conclusions of this cross-sectional study.

Objective: Two longitudinal studies examined whether effects of subjective norms on secondary cancer prevention behaviors were stronger and more likely to non-deliberative (i.e., partially independent of behavioral intentions) for African Americans (AAs) compared to European Americans (EAs), and whether the effects were moderated by racial identity. Design: Study 1 examined between-race differences in predictors of physician communication following receipt of notifications about breast density. Study 2 examined predictors of prostate cancer screening among AA men who had not been previously screened.Main Outcome Measures: Participants' injunctive and descriptive normative perceptions; racial identity (Study 2); self-reported physician communication (Study 1) and PSA testing (Study 2) behaviors at follow up. Results: In Study 1, subjective norms were significantly associated with behaviors for AAs, but not for EAs. Moreover, there were significant non-deliberative effects of norms for AAs. In Study 2, there was further evidence of non-deliberative effects of subjective norms for AAs. Non-deliberative effects of descriptive norms were stronger for AAs who more strongly identified with their racial group. Conclusion: Subjective norms, effects of which are non-deliberative and heightened by racial identity, may be a uniquely robust predictor of secondary cancer prevention behaviors for AAs. Implications for targeted screening interventions are discussed.

Objective: Transdiagnostic cognitive behaviour therapy (TCBT) is an efficacious treatment for anxiety and depression, but its mechanisms of change remain poorly understood. The current study used thematic framework analysis to analyse how patients, recruited in a recent trial on transdiagnostic group CBT (TGCBT), understood the treatment and its mechanisms., Design: Cross-sectional thematic framework analysis., Method: The sample included 24 participants suffering from anxiety and/or depression, divided into two groups by treatment efficacy (i.e., group doing well and group doing not so well) in order to evaluate whether different understandings of the treatment affected its efficacy. The participants were interviewed and completed self-report measures. They were encouraged to discuss what they believed to be helpful and unhelpful in the TGCBT and what they believed to be the mechanisms of change in the treatment. Each interview was recorded, transcribed verbatim and themes were identified., Results: The analysis revealed four overarching themes and 18 subthemes. The overarching themes were as follows: Cognitive and behavioural flexibility, Awareness/understanding of symptoms and triggers, Therapeutic alliance and engagement, and finally Attitudes towards treatment. Four of the 18 subthemes corresponded to a differentiation between the groups: Cognitive flexibility and Comparison with others in the group on the one hand and Cognitive inflexibility and Negative attitudes towards treatment on the other., Conclusion: The most important difference between the groups appeared to be CBT-specific, that is, cognitive flexibility that characterized the group doing well where thematic analysis did not indicate that other themes were important., Practitioner Points: Findings The analysis revealed four overarching themes and 18 subthemes, four of which corresponded to the difference between the two groups of participants based on treatment efficacy. The four differentiating subthemes were cognitive flexibility and comparison with others, which characterized the group doing well, and cognitive inflexibility and negative attitude towards treatment, which characterized the group doing less well. The theme evaluated as the most important for the efficacy of the transdiagnostic cognitive behaviour therapy and patients' understanding of the treatment was cognitive flexibility, which characterized the group doing well. Limitations Use of qualitative methodology restricts the generalizability of our results. Data are built on answers from only 24 participants., (© 2019 The British Psychological Society.)

Purpose: Recent trends indicate increased use of contralateral prophylactic mastectomy (CPM) among newly diagnosed breast cancer patients, particularly those who test positive for a pathogenic variant in the BRCA1/2 genes. However, the rate of CPM among patients who test negative or choose not to be tested is surprisingly high. We aimed to identify patient predictors of CPM following breast cancer diagnosis among such patients., Methods: As part of a randomized controlled trial of rapid genetic counseling and testing vs. usual care, breast cancer patients completed a baseline survey within 6 weeks of diagnosis and before definitive surgery. Analyses focused on patients who opted against testing (n = 136) or who received negative BRCA1/2 test results (n = 149). We used multivariable logistic regression to assess the associations between sociodemographic, clinical- and patient-reported factors with use of CPM., Results: Among patients who were untested or who received negative test results, having discussed CPM with one's surgeon at the time of diagnosis predicted subsequent CPM. Patients who were not candidates for breast-conserving surgery and those with higher levels of cancer-specific intrusive thoughts were also more likely to obtain a CPM., Conclusion: The strongest predictors of CPM in this population were objective clinical factors and discussion with providers. However, baseline psychosocial factors were also independently related to the receipt of CPM. Thus, although CPM decisions are largely guided by relevant clinical factors, it is important to attend to psychosocial factors when counseling newly diagnosed breast cancer patients about treatment options.

Background: Cancer related fatigue (CRF) is one of the most prevalent and distressing long-term complaints reported by (non-) Hodgkin survivors. To date there has been no standard treatment for CRF in this population. A novel and promising approach to treat CRF is exposure to bright white light therapy. Yet, large scale randomized controlled trials testing its efficacy in these patients and research on potential mechanisms is lacking. The objective of the current study is to investigate the efficacy of light therapy as a treatment for CRF and to explore potential mechanisms., Methods/design: In a multicenter, randomized controlled trial we are evaluating the efficacy of two intensities of light therapy in reducing CRF complaints and restrictions caused by CRF in survivors of Hodgkin lymphoma or diffuse large B-cell lymphoma. Secondary outcomes include sleep quality, depression, anxiety, quality of life, cognitive complaints, cancer worries, fatigue catastrophizing, self-efficacy to handle fatigue, biological circadian rhythms of melatonin, cortisol and activity, and biomarkers of inflammation. We will recruit 128 survivors, with fatigue complaints, from academic and general hospitals. Survivors are randomized to either an intervention (exposure to bright white light) or a comparison group (exposure to dim white light). The longitudinal design includes four measurement points at baseline (T0), post-intervention at 3.5 weeks (T1), 3 months post-intervention (T2) and 9 months post-intervention (T3). Each measurement point includes self-reported questionnaires and actigraphy (10 days). T0 and T1 measurements also include collection of blood and saliva samples., Discussion: Light therapy has the potential to be an effective treatment for CRF in cancer survivors. This study will provide insights on its efficacy and potential mechanisms. If proven to be effective, light therapy will provide an easy to deliver, low-cost and low-burden intervention, introducing a new era in the treatment of CRF., Trial Registration: The study is registered at ClinicalTrials.gov on August 8th 2017( NCT03242902 ).

Background: Over a third of multiple myeloma (MM) patients report clinical levels of depression during autologous stem cell transplant (ASCT) hospitalization. We report preliminary results from a randomized clinical trial investigating the effect of Programmed Environmental Illumination (PEI) of hospital rooms on depression., Methods: Patients (N = 187) scheduled to receive an ASCT were assessed for eligibility. Those who met study eligibility criteria (n = 44) were randomly assigned to one of two PEI conditions involving delivery of either circadian active bright white light (BWL) or circadian inactive dim white light (DWL) throughout the room from 7 to 10 am daily during hospitalization. Patients completed the Center for Epidemiological Studies Depression Scale (CES-D) prior to hospitalization, at days 2 and 7 post-transplant, and on the third day of engraftment., Results: General linear model analyses revealed no difference between the groups in CES-D total score at baseline (P = 0.7859). A longitudinal linear mixed model analysis revealed a significant interaction between time of assessment and light condition [F(3,107) = 2.90; P = 0.0386; ɳ 2  = 0.08)], indicating that PEI prevented the development of depression during hospitalization, with effects reaching significance by the third day of engraftment. At the third day of engraftment, 68.4% of the participants in the DWL comparison condition met the criteria for clinically significant depression compared to 42.1% in the BWL condition., Conclusion: These findings demonstrate that PEI using BWL during MM ASCT hospitalization is effective in reducing the development of depression. Future studies should examine the mechanisms whereby PEI improves depression., (© 2018 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Purpose: Breast cancer patients who carry BRCA1/BRCA2 gene mutations may consider bilateral mastectomy. Having bilateral mastectomy at the time of diagnosis not only reduces risk of a contralateral breast cancer, but can eliminate the need for radiation therapy and yield improved reconstruction options. However, most patients do not receive genetic counseling or testing at the time of their diagnosis. In this trial, we tested proactive rapid genetic counseling and testing (RGCT) in newly diagnosed breast cancer patients in order to facilitate pre-surgical genetic counseling and testing., Methods: We recruited newly diagnosed breast cancer patients at increased risk for carrying a BRCA1/2 mutation. Of 379 eligible patients who completed a baseline survey, 330 agreed to randomization in a 2:1 ratio to RGCT (n = 220) versus UC (n = 108). Primary outcomes were genetic counseling and testing uptake and breast cancer surgical decisions., Results: RGCT led to higher overall (83.8% vs. 54.6%; p < 0.0001) and pre-surgical (57.8% vs. 38.7%; p = 0.001) genetic counseling uptake compared to UC. Despite higher rates of genetic counseling, RGCT did not differ from UC in overall (54.1% vs. 49.1%, p > 0.10) or pre-surgical (30.6% vs. 27.4%, p > 0.10) receipt of genetic test results nor did they differ in uptake of bilateral mastectomy (26.6% vs. 21.8%, p > 0.10)., Conclusions: Although RGCT yielded increased genetic counseling participation, this did not result in increased rates of pre-surgical genetic testing or impact surgical decisions. These data suggest that those patients most likely to opt for genetic testing at the time of diagnosis are being effectively identified by their surgeons.

Objective: Most adolescents regularly consume caffeine. Whereas observational studies have suggested that coffee may be cardio-protective, pharmacological experimentation with adults shows that caffeine at dietary doses increases blood pressure, thereby implicating regular caffeine consumption as a potential source of harm for cardiovascular health. The present study was in response to the dearth of caffeine research among younger consumers. It was hypothesised that compared to the consumption of little or no caffeine, adolescents who habitually consume caffeine have overall higher blood pressure and increased vascular resistance., Method: Using a quasi-experimental design, continuous measurements of blood pressure, cardiac output, and total peripheral resistance were taken non-invasively from adolescents (n = 333) aged 14-15 years and 18-19 years who reported "low", "moderate", or "high" levels of caffeine intake. Measurements were conducted when participants generally had negligible or low systematic caffeine levels while at rest, during stress, and during recovery from stress., Results: Whereas habitual caffeine consumption did not predict blood pressure level, higher caffeine intake was associated with modestly increased vascular resistance during all phases of the experiment (i.e., at rest, during stress, and during recovery from stress)., Conclusions: Present findings are important because they suggest that early exposure to caffeine may lead to persistent increases in vascular resistance, which in turn is an acknowledged risk factor for the development of hypertension. These results highlight the need for further studies of adolescents to determine the robustness of any persistent caffeine-related hemodynamic effects, and the implications such effects could have for long-term cardiovascular health., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: The aim of this pilot study was to examine the impact of a brief physical activity intervention on adolescents' subjective sleep quality. Cross-sectional studies indicate that physically active adolescents have better subjective sleep quality than those with more sedentary habits. However, less is known about the effectiveness of physical activity interventions in improving adolescents' subjective sleep quality., Methods: In a three-week physical activity intervention, four Icelandic upper secondary schools were randomized to either an intervention group with pedometers and step diaries or a control group without pedometers and diaries. Out of 84, a total of 53 students, aged 15-16 years, provided complete data or a minimum of two days step data (out of three possible) as well as sleep quality measures at baseline and follow-up. Subjective sleep quality, the primary outcome in this study, was assessed with four individual items: sleep onset latency, nightly awakenings, general sleep quality, and sleep sufficiency. Daily steps were assessed with Yamax CW-701 pedometers., Results: The intervention group ( n = 26) had significantly higher average step-count ( p = 0.03, partial η 2 = 0.093) compared to the control group ( n = 27) at follow-up. Subjective sleep quality improved ( p = 0.02, partial η 2 = 0.203) over time in the intervention group but not in the control group., Conclusions: Brief physical activity interventions based on pedometers and step diaries may be effective in improving adolescents' subjective sleep quality. This has important public health relevance as the intervention can easily be disseminated and incorporated into school curricula.

Background: There has been some doubts raised in earlier studies about the efficacy of hormone replacement therapy (HRT) in reducing endocrine and sexual problems in women who have undergone a risk-reducing salpingo-oophorectomy (RRSO)., Methods: In this prospective, observational study, we recruited 178 premenopausal women with a high risk for ovarian cancer. Fifty-seven women opted for RRSO and 121 for gynaecological screening (GS). Women completed questionnaires before surgery (T1) and 3 (T2) and 9 (T3) months post surgery, or at equivalent time points for the GS-group. Menopausal symptoms were assessed with the Functional Assessment of Cancer Therapy-Endocrine Subscale (FACT-ES) and sexual functioning with the Sexual Activity Questionnaire (SAQ). Groups were compared using repeated measures mixed effect models for continuous variables, and generalised estimating equations for longitudinal ordered categorical data., Results: Twenty-seven women who underwent RRSO used HRT after surgery (HRT-users) and 30 did not (HRT-non-users). There were no significant group differences at baseline on the outcome variables. Compared to the HRT-users, the HRT-non-users exhibited a significant increase in overall endocrine symptoms (p = 0.001, effect size (ES) = -0.40 and p < 0.001, ES = -0.59 at T1 and T2, respectively), and in sexual discomfort (p < 0.001, ES = 0.74 and p < 0.001, ES = 1.17). The effect size provides an indication of the magnitude of the observed group differences. An effect size of 0.50 or greater is generally considered to be clinically relevant. No significant differences over time were observed between the HRT-users and the GS-group on any of the outcomes., Conclusion: Our results suggest that HRT use in the first year after RRSO has beneficial effects in terms of minimising endocrine symptoms and sexual symptoms in premenopausal women who have undergone RRSO., (Copyright © 2017. Published by Elsevier Ltd.)

Background: A randomized experiment by Rini et al. (Health Psychol. 33(12):1541-1551, 2014) demonstrated that expressive helping, which involves three expressive writing sessions regarding hematopoietic stem cell transplant, followed by one writing session directed toward helping other stem cell transplant recipients, reduced psychological distress and bothersome physical symptoms among stem cell transplant recipients with elevated survivorship problems, relative to a neutral writing control condition., Purpose: The current study evaluated whether word use reflective of emotional expression, cognitive processing, and change in perspective mediates the effects of expressive helping., Method: The essays of 67 stem cell transplant recipients with high survivorship problems were analyzed with Linguistic Inquiry and Word Count. Multiple mediation modeling was used to test the hypothesized mechanisms of expressive helping on distress and bothersome physical symptoms., Results: Relative to the control condition, expressive helping produced significant reductions in psychological distress and marginal reductions in physical symptom bother in the analyzed subset of participants from the parent study. Results indicated that positive emotion word use significantly mediated effects of expressive helping on reduced distress, but only for participants who used average (compared to above or below average) rates of negative emotion words. Cognitive processing and change in perspective did not significantly mediate benefits of expressive helping., Conclusions: Expressive helping carried its positive effects on distress through participants' higher expression of positive emotions when coupled with moderate rates of negative emotions. Findings highlight the benefit of expressing both positive and negative emotions in stressful situations.

Background: Telephone delivery of genetic counseling is an alternative to in-person genetic counseling because it may extend the reach of genetic counseling. Previous reports have established the noninferiority of telephone counseling on short-term psychosocial and decision-making outcomes. Here we examine the long-term impact of telephone counseling (TC) vs in-person counseling (usual care [UC])., Methods: We recruited high-risk women for a noninferiority trial comparing TC with UC. Of 1057 potentially eligible women, 669 were randomly assigned to TC (n = 335) or UC (n = 334), and 512 completed the 12-month follow-up. Primary outcomes were patient-reported satisfaction with genetic testing decision, distress, and quality of life. Secondary outcomes were uptake of cancer risk management strategies., Results: TC was noninferior to UC on all primary outcomes. Satisfaction with decision ( d =  0.13, lower bound of 97.5% confidence interval [CI] = -0.34) did not cross its one-point noninferiority limit, cancer-specific distress ( d =  -2.10, upper bound of 97.5% CI = -0.07) did not cross its four-point noninferiority limit, and genetic testing distress ( d =  -0.27, upper bound of 97.5% CI = 1.46), physical function ( d =  0.44, lower bound of 97.5% CI = -0.91) and mental function ( d =  -0.04, lower bound of 97.5% CI = -1.44) did not cross their 2.5-point noninferiority limit. Bivariate analyses showed no differences in risk-reducing mastectomy or oophorectomy across groups; however, when combined, TC had significantly more risk-reducing surgeries than UC (17.8% vs 10.5%; χ 2 = 4.43, P =  .04)., Conclusions: Findings support telephone delivery of genetic counseling to extend the accessibility of this service without long-term adverse outcomes.

Telephone genetic counseling (TC) for hereditary breast/ovarian cancer risk has been associated with positive outcomes in high risk women. However, little is known about how patients perceive TC. As part of a randomized trial of TC versus usual care (UC; in-person genetic counseling), we compared high risk women's perceptions of: (1) overall satisfaction with genetic counseling; (2) convenience; (3) attentiveness during the session; (4) counselor effectiveness in providing support; and (5) counselor ability to recognize emotional responses during the session. Among the 554 participants (TC, N = 272; UC, N = 282), delivery mode was not associated with self-reported satisfaction. However, TC participants found counseling significantly more convenient than UC participants (OR = 4.78, 95 % CI = 3.32, 6.89) while also perceiving lower levels of support (OR = 0.56, 95 % CI = 0.40-0.80) and emotional recognition (OR = 0.53, 95 % CI = 0.37-0.76). In exploratory analyses, we found that non-Hispanic white participants reported higher counselor support in UC than in TC (69.4 % vs. 52.8 %; OR = 3.06, 95 % CI = 1.39-6.74), while minority women perceived less support in UC vs. TC (58.3 % vs. 38.7 %; OR = 0.80, 95 % CI = 0.39-1.65). We discuss potential research and practice implications of these findings which may further improve the effectiveness and utilization of TC.

Purpose: Female breast cancer patients carrying a BRCA1/2 mutation have an increased risk of second primary breast cancer. Rapid genetic counseling and testing (RGCT) before surgery may influence choice of primary surgical treatment. In this article, we report on the psychosocial impact of RGCT., Methods: Newly diagnosed breast cancer patients at risk for carrying a BRCA1/2 mutation were randomized to an intervention group (offer of RGCT) or a usual care control group (ratio 2:1). Psychosocial impact and quality of life were assessed with the Impact of Events Scale, Hospital Anxiety and Depression Scale, Cancer Worry Scale, and the EORTC QLQ-C30 and QLQ-BR23. Assessments took place at study entry and at 6- and 12-month follow-up visits., Results: Between 2008 and 2010, 265 patients were recruited into the study. Completeness of follow-up data was more than 90%. Of the 178 women in the intervention group, 177 had genetic counseling, of whom 71 (40%) had rapid DNA testing and 59 (33%) received test results before surgery. Intention-to-treat and per-protocol analyses showed no statistically significant differences between groups over time in any of the psychosocial outcomes., Conclusions: In this study, RGCT in newly diagnosed breast cancer patients did not have any measurable adverse psychosocial effects.

Purpose: As genetic counseling and testing become more fully integrated into clinical care, alternative delivery models are increasingly prominent. This study examines predictors of genetic testing for hereditary breast/ovarian cancer among high-risk women in a randomized trial of in-person versus telephone-based genetic counseling., Methods: Methods include multivariable logistic regression and interaction analyses., Results: Of the 669 participants, 600 completed counseling and 523 received test results. As previously reported, participants randomized to telephone counseling were significantly less likely to be tested. In intention-to-treat analyses, completion of counseling and testing was associated with: race/ethnicity (odds ratio (OR) = 1.96, 95% confidence interval (CI): 1.20-3.20), perceived stress (OR = 0.89, 95% CI: 0.81-0.98), knowledge (OR = 1.12, 95% CI: 1.02-1.23), and randomization group (OR = 1.48, 95% CI: 1.01-2.16). Further, race/ethnicity moderated the association between randomization group and testing; minority women receiving telephone counseling were least likely to complete testing., Conclusion: Evidence for logistical and communication-based explanations for this interaction is presented. The overall increased access made possible with telephone genetic counseling should be considered in light of the possibility that this may also lead to lower rates of testing among high-risk minority women. Additional care should be taken to assess and address potential barriers when services are delivered by telephone.Genet Med 17 6, 467-475.

Despite the life-saving information that genetic counseling can provide for women at hereditary breast and/or ovarian cancer (HBOC) risk, Latinas disproportionately underuse such services. Understanding Latinas' beliefs and attitudes about BRCA genetic counseling may be the key to better health promotion within this underserved, at-risk group. We conducted 12 focus groups (N = 54) with at-risk Latina women in New York City, followed by 30 in-depth interviews among a subset of the focus group women. Both were professionally transcribed, translated where applicable and data analysis was completed by two coders trained in qualitative methods. Results revealed personal and community knowledge about BRCA genetic counseling was relatively low, although women felt largely positive about counseling. The main motivator to undergo genetic counseling was concerns about learning family members' cancer status, while the main barrier was competing demands. Generational differences were apparent, with younger women (approximately <55 years) reporting that they were more interested in educating themselves about counseling and other ways to prevent cancer. Younger women were also less likely to ascribe to traditionally Latino-centered cultural beliefs which could serve as barriers (e.g. machismo, fatalismo, destino) to undergoing genetic counseling. Participants were largely enthusiastic about educational efforts to increase awareness of genetic counseling among Latinos. Revealing the beliefs and attitudes of underserved Latinas may help shape culturally appropriate educational materials and promotion programs to increase BRCA genetic counseling uptake within this underrepresented community.

Although fears of colonoscopy may deter African Americans and Hispanics from having a screening colonoscopy, little is known about these fears. This study examined the proportion of African Americans and Hispanics who experience colonoscopy-specific fears and identified factors associated with these fears. Data were collected at an academic hospital in New York City between 2008-2010. African Americans (N = 383) and Hispanics (N = 407) who received a recommendation for a screening colonoscopy completed a questionnaire that assessed: colonoscopy-specific fears, demographics, and psychological variables. Presence of colonoscopy-specific fears was endorsed by 79.5% of participants. Being female (p < 0.001), speaking English (p < 0.001), having greater perceived risk of colorectal cancer (CRC) (p < 0.01), greater worry about risk of CRC (p < 0.01), greater fear of CRC (p < 0.001) and lower levels of self-efficacy of having a colonoscopy (p < 0.01) were associated with greater colonoscopy-specific fears. Results can inform interventions designed to assuage fears in African Americans and Hispanics.

Objective: Genetic testing for breast and ovarian cancer susceptibility is now part of routine clinical practice. Although rates of risk-reducing surgery following genetic testing have been increasing, little is known about attitudes toward risk-reducing surgery in women prior to genetic counseling and testing. This study examines correlates of patient intentions to undergo risk-reducing mastectomy (RRM) and risk-reducing oophorectomy (RRO)., Methods: Participants were 696 women, ages 21-85, who sought breast cancer gene 1 and 2 (BRCA1/2) genetic counseling and had at least a 10% risk of carrying a mutation. The sample included women who were affected with breast or ovarian cancer and unaffected women with a known familial BRCA1/2 mutation. Participants completed a precounseling telephone questionnaire., Results: Prior to receiving genetic counseling, 23.3% of participants were considering RRM and 42.5% were considering RRO. Variables that were independently associated with RRM intentions were cancer-specific distress (OR = 1.14, 95% CI = 1.03-1.26), perceived risk of breast cancer (OR = 1.16, 95% CI = 1.05-1.28), education (OR = 1.76, 95% CI = 1.03-2.99), and age (OR = 0.96, 95% CI = 0.95-0.98). Predictors of RRO intentions were perceived risk for ovarian cancer (OR = 1.25, 95% CI = 1.14-1.37), perceived risk of carrying a BRCA1/2 mutation (OR = 1.74, 95% CI = 1.15-2.62), marital status (OR = 1.92, 95% CI = 1.34-2.76), and age (OR = 1.02, 95% CI = 1.00-1.03)., Conclusions: Because precounseling intentions predict subsequent risk-reducing surgery decisions, this study identified patient factors associated with surgical intentions. These factors reinforce the critical role for pretest genetic counseling in communicating accurate risk estimates and management options, and addressing psychosocial concerns, to facilitate informed decision making regarding RRM and RRO., (Copyright © 2014 John Wiley & Sons, Ltd.)

Purpose: Although guidelines recommend in-person counseling before BRCA1/BRCA2 gene testing, genetic counseling is increasingly offered by telephone. As genomic testing becomes more common, evaluating alternative delivery approaches becomes increasingly salient. We tested whether telephone delivery of BRCA1/2 genetic counseling was noninferior to in-person delivery., Patients and Methods: Participants (women age 21 to 85 years who did not have newly diagnosed or metastatic cancer and lived within a study site catchment area) were randomly assigned to usual care (UC; n = 334) or telephone counseling (TC; n = 335). UC participants received in-person pre- and post-test counseling; TC participants completed all counseling by telephone. Primary outcomes were knowledge, satisfaction, decision conflict, distress, and quality of life; secondary outcomes were equivalence of BRCA1/2 test uptake and costs of delivering TC versus UC., Results: TC was noninferior to UC on all primary outcomes. At 2 weeks after pretest counseling, knowledge (d = 0.03; lower bound of 97.5% CI, -0.61), perceived stress (d = -0.12; upper bound of 97.5% CI, 0.21), and satisfaction (d = -0.16; lower bound of 97.5% CI, -0.70) had group differences and confidence intervals that did not cross their 1-point noninferiority limits. Decision conflict (d = 1.1; upper bound of 97.5% CI, 3.3) and cancer distress (d = -1.6; upper bound of 97.5% CI, 0.27) did not cross their 4-point noninferiority limit. Results were comparable at 3 months. TC was not equivalent to UC on BRCA1/2 test uptake (UC, 90.1%; TC, 84.2%). TC yielded cost savings of $114 per patient., Conclusion: Genetic counseling can be effectively and efficiently delivered via telephone to increase access and decrease costs.

Background: Female breast cancer patients with a BRCA1/2 mutation have an increased risk of contralateral breast cancer. We investigated the effect of rapid genetic counselling and testing (RGCT) on choice of surgery., Methods: Newly diagnosed breast cancer patients with at least a 10% risk of a BRCA1/2 mutation were randomised to an intervention group (offer of RGCT) or a control group (usual care; ratio 2 : 1). Primary study outcomes were uptake of direct bilateral mastectomy (BLM) and delayed contralateral prophylactic mastectomy (CPM)., Results: Between 2008 and 2010, we recruited 265 women. On the basis of intention-to-treat analyses, no significant group differences were observed in percentage of patients opting for a direct BLM (14.6% for the RGCT group vs 9.2% for the control group; odds ratio (OR) 2.31; confidence interval (CI) 0.92-5.81; P=0.08) or for a delayed CPM (4.5% for the RGCT group vs 5.7% for the control group; OR 0.89; CI 0.27-2.90; P=0.84). Per-protocol analysis indicated that patients who received DNA test results before surgery (59 out of 178 women in the RGCT group) opted for direct BLM significantly more often than patients who received usual care (22% vs 9.2%; OR 3.09, CI 1.15-8.31, P=0.03)., Interpretation: Although the large majority of patients in the intervention group underwent rapid genetic counselling, only a minority received DNA test results before surgery. This may explain why offering RGCT yielded only marginally significant differences in uptake of BLM. As patients who received DNA test results before surgery were more likely to undergo BLM, we hypothesise that when DNA test results are made routinely available pre-surgery, they will have a more significant role in surgical treatment decisions.

Background: Although BRCA1/2 genetic testing is discouraged in minors, mothers may disclose their own results to their children. Factors affecting patients' disclosure decisions and patient outcomes of disclosure are largely unknown., Methods: Mothers (N = 221) of children aged 8 to 21 years enrolled in this prospective study of family communication about cancer genetic testing. Patients underwent BRCA1/2 genetic counseling and testing, and completed standardized behavioral assessments before and 1-month following receipt of their results., Results: Most patients (62.4%) disclosed BRCA1/2 test results to their child. Patients were more likely to disclose if they received negative or uninformative versus positive results [OR = 3.11; 95% confidence interval (CI), 1.11-8.71; P = .03], their child was 13 years of age or more versus younger (OR = 5.43; 95% CI, 2.18-13.53; P < .001), and as the ratio of patients' perceived benefits of disclosure outweighed potential risks (OR = 2.40; 95% CI, 1.63-3.54; P < .001). Postdecision satisfaction about disclosure was lowest among nondisclosing patients (P < .001) and those reporting greater decisional conflict (P < .001)., Conclusions: Patients commonly discuss their BRCA1/2 results with their teenage and young adult children, especially if the information is perceived as beneficial. Satisfaction with disclosure decision making remains lowest among nondisclosing and conflicted patients. Family communication decision support adjuncts to genetic counseling are needed to help ameliorate these effects., Impact: This study describes the prevalence of family communication about maternal BRCA1/2 genetic testing with minor children, and decisions and outcomes of disclosure.

Background: Despite underuse of genetic services for hereditary breast and/or ovarian cancer risk among Latinas (including counseling and testing for BRCA mutations), there is little known about the barriers and facilitators to BRCA genetic counseling among this group. It is imperative to first understand factors that may impede Latinas seeking BRCA genetic counseling, as it is considered a prerequisite to testing., Methods: Quantitative telephone interviews (N=120) were conducted with at-risk Latinas in New York City to investigate interest, barriers, and beliefs about BRCA genetic counseling. Statistical analyses examined predictors of intention to undergo BRCA genetic counseling., Results: Despite moderate levels of awareness, Latinas held largely positive beliefs, attitudes, and knowledge about BRCA genetic counseling. Perceived barriers included logistic concerns (e.g., where to go, cost/health insurance coverage), emotional concerns (e.g., fear, distress), and competing life concerns (e.g., too many other things to worry about, too busy taking care of children or family members). Multivariate results showed that the strongest predictor of intention to undergo BRCA genetic counseling was competing life concerns; Latinas with more competing life concerns were less likely to intend to undergo BRCA genetic counseling (p=0.0002). Other significant predictors of intention included perceived risk of carrying a BRCA mutation (p=0.01) and referral by their physician (p=0.02)., Conclusion: Educational efforts to promote BRCA genetic counseling among at-risk Latinas and increase referrals by their physicians should incorporate discussion of perceived barriers to counseling, such as competing life concerns that Latinas may need to overcome in order to seek genetic counseling., (Copyright © 2012 John Wiley & Sons, Ltd.)

Little is known about psychological distress among women of African descent who are at high risk for a BRCA mutation. This is a group for whom breast cancer risk reduction is critical due to the group's high rates of breast cancer mortality. Distress is important to consider as it may reduce the potential benefit of genetic counseling and negatively affect decision making related to risk reduction. The goals of the current study were to examine breast cancer-specific distress and depressive symptoms in women of African descent at who are at high risk for a BRCA mutation and to identify background factors associated with these outcomes. Participants were 148 high-risk African American and Caribbean women who were part of a larger study that offered participants BRCA counseling at no cost. Participants completed the Impact of Events Scale, which assessed breast cancer-specific distress, and the Center of Epidemiological Studies-Depression Scale, which assessed depressive symptoms. Results of analyses revealed that almost half of the sample achieved scores indicating high and clinically significant breast cancer-specific distress, while almost one-third had clinically significant depression scores. Results further showed that low income was significantly associated with cancer-specific distress, while having a cancer diagnosis was significantly associated with depressive symptoms. These results underscore the need for targeted psychological support throughout the genetic risk assessment process for this particular high-risk group.

Low use of BRCA counseling and testing services among black women has been reported in several studies, even though such services may play an important role in reducing racial disparities in breast cancer. Surprisingly, little is known about the extent to which black women at high risk for BRCA mutations actually receive recommendations for BRCA counseling. Thus, a primary goal of the current study was to identify sociodemographic and clinical factors associated with the receipt of physician recommendation for genetic counseling based on the self-report of black women at high risk for BRCA mutations. In this cross-sectional study, participants were 125 black women with a family history suggestive of a hereditary breast and/or ovarian cancer syndrome. Participants were asked about their receipt of genetic counseling recommendation or referral. Physician recommendation was reported by over two-thirds of the sample. Multivariate analyses revealed that older age and study recruitment source, specifically community-based recruitment, were significantly and independently associated with lower likelihood of physician recommendation. Findings highlight the need for additional research to identify subgroups of high-risk black women among whom physician recommendation of genetic counseling is low but would benefit from such counseling.

Aim: Among mothers undergoing BRCA1/2 testing and their spouses/partners, this study sought to examine decision support needs and motivations for family communication of genetic risk information to asymptomatic children., Methods: This study gathered data from 213 tested mothers and 104 of their untested parenting partners 1 month after maternal receipt of genetic test results and upon making a decision about communicating genetic information to their child (ages 8-21 years). Data include parents' perceived needs for family communication decision support, decision motivations, and parent-child communication., Results: Parents reported high decision support needs (e.g., educational materials, professional counseling, peer assistance). Motivations for disclosure to children among mothers and partners focused on promoting the parent-child bond and maintaining family health (55.3% and 75%, respectively) and promoting positive child affect (44.7% and 25.5%, respectively). Motivations for nondisclosure to children among mothers and partners focused on the lack of appropriateness (69.6% and 51.3%, respectively) and relative importance of genetic test results (30.4% and 48.7%, respectively). Significant discrepancies in parental motivation for family communication were observed. Decision support needs were highest among disclosing mothers with affect-related motivations [t (129)=2.47; p=0.01]. Parent-child communication was poorest among nondisclosing mothers concerned about the appropriateness of genetic information for their child [t (77)=-3.29; p=.002]., Conclusions: Parents receiving information about hereditary cancer predisposition have unmet needs when making decisions about disclosing genetic risk information to their asymptomatic children. These data can guide the development of cancer risk communication decision support interventions for parents undergoing such testing.

Purpose: This study investigated the educational needs of frontline healthcare clinicians about cancer family history and genetic counseling for cancer risk., Methods: We conducted a voluntary, anonymous survey among (1) general medicine clinicians, (2) obstetrics/gynecology clinicians, and (3) nurse practitioners at Mount Sinai School of Medicine in New York City., Results: A total of 143 clinicians completed the survey (response rate 81%). The majority of clinicians (77.5%) reported regularly completing family histories on cancer risk for their patients, but only 1.7% considered themselves "experts" in interpreting risk to make prevention, screening, and treatment recommendations. Numerous barriers to cancer family history collection were noted. More than half (55.8%) reported referring patients to genetic counseling, although only 14.3% reported confidence in their ability to make appropriate referrals. The majority reported that they would apply genetic counseling for cancer risk in their practice if they had the skills (84.9%). There was some variability found regarding specialty., Conclusion: Despite widespread use of family histories for cancer risk, barriers remain to appropriate cancer risk management among frontline healthcare clinicians. Development of educational training programs to assist clinicians with collection of cancer family history information, interpretation, and appropriate referral along with teaching direct application of a modified form of genetic counseling for low-medium risk patients and referral of patients at genetic risk is warranted.

Patient navigation (PN) is increasingly used in cancer care, but little is known about the identification and training of patient navigators. PN may be implemented by professional health care providers, paraprofessionals, or lay health workers and, therefore, presents an opportunity to compare professional and lay interventionist experiences. The goal of the current report is to compare the training experiences of four professional (Pro) and five lay (LHW) patient navigators enlisted to increase colonoscopy adherence among African American primary care patients. The results of early assessments showed that LHWs' intervention-related knowledge was significantly lower than that of Pros. However, there were no significant differences in knowledge scores between LHWs and Pros for most subsets of knowledge items in later assessments. Furthermore, there were no significant differences in LHWs' and Pros' reported self-efficacy and satisfaction with training. Findings support the use of diverse strategies to train and prepare LHWs as patient navigators.

Few studies have quantitatively evaluated the uptake and outcomes of BRCA1/2 genetic counseling and testing in men. We conducted a prospective longitudinal study to describe and compare uptake of and psychosocial outcomes following BRCA1/2 testing in a sample of men and women at high-risk for carrying a BRCA1/2 mutation. Men (n = 98) and women (n = 243) unaffected with cancer completed baseline assessments prior to genetic counseling and testing and then 6- and 12-months post-testing. Most men (n = 94; 95.9%) opted to have genetic testing, of whom 44 received positive BRCA1/2 genetic test results and 50 received true negative results. Among women, 93.4% had genetic testing, of whom 79 received positive results and 148 received negative results. In multivariate models, male BRCA1/2 carriers reported significantly higher genetic testing distress (6-months: Z = 4.48, P < 0.0001; 12-months: Z = 2.78, P < 0.01) than male non-carriers. After controlling for baseline levels of distress, no statistically significant differences emerged between male and female BRCA1/2 carriers in psychological distress at 12-months post-testing, although absolute differences were evident over time. Predictors of distress related to genetic testing among male carriers at 12-months included higher baseline cancer-specific distress (Z = 4.73, P < 0.0001) and being unmarried (Z = 2.18, P < 0.05). Similarly, baseline cancer-specific distress was independently associated with cancer-specific distress at 6- (Z = 3.66, P < 0.001) and 12-months (Z = 4.44, P < 0.0001) post-testing among male carriers. Clinically, our results suggest that pre-test assessment of distress and creation of educational materials specifically tailored to the needs and concerns of male carriers may be appropriate in this important but understudied high-risk group.

Background: It has been estimated that between 5% and 10% of women diagnosed with breast cancer have a hereditary form of the disease, primarily caused by a BRCA1 or BRCA2 gene mutation. Such women have an increased risk of developing a new primary breast and/or ovarian tumor, and may therefore opt for preventive surgery (e.g., bilateral mastectomy, oophorectomy). It is common practice to offer high-risk patients genetic counseling and DNA testing after their primary treatment, with genetic test results being available within 4-6 months. However, some non-commercial laboratories can currently generate test results within 3 to 6 weeks, and thus make it possible to provide rapid genetic counseling and testing (RGCT) prior to primary treatment. The aim of this study is to determine the effect of RGCT on treatment decisions and on psychosocial health., Methods/design: In this randomized controlled trial, 255 newly diagnosed breast cancer patients with at least a 10% risk of carrying a BRCA gene mutation are being recruited from 12 hospitals in the Netherlands. Participants are randomized in a 2:1 ratio to either a RGCT intervention group (the offer of RGCT directly following diagnosis with tests results available before surgical treatment) or to a usual care control group. The primary behavioral outcome is the uptake of direct bilateral mastectomy or delayed prophylactic contralateral mastectomy. Psychosocial outcomes include cancer risk perception, cancer-related worry and distress, health-related quality of life, decisional satisfaction and the perceived need for and use of additional decisional counseling and psychosocial support. Data are collected via medical chart audits and self-report questionnaires administered prior to randomization, and at 6 month and at 12 month follow-up., Discussion: This trial will provide essential information on the impact of RGCT on the choice of primary surgical treatment among women with breast cancer with an increased risk of hereditary cancer. This study will also provide data on the psychosocial consequences of RGCT and of risk-reducing behavior., Trial Registration: The study is registered at the Netherlands Trial Register (NTR1493) and ClinicalTrials.gov (NCT00783822).

Background: Due to disparities in the use of genetic services, there has been growing interest in examining beliefs and attitudes related to genetic testing for breast and/or ovarian cancer risk among women of African descent. However, to date, few studies have addressed critical cultural variations among this minority group and their influence on such beliefs and attitudes., Methods: We assessed ethnic, racial and cultural identity and examined their relationships with perceived benefits and barriers related to genetic testing for cancer risk in a sample of 160 women of African descent (49% self-identified African American, 39% Black-West Indian/Caribbean, 12% Black-Other) who met genetic risk criteria and were participating in a larger longitudinal study including the opportunity for free genetic counseling and testing in New York City. All participants completed the following previously validated measures: (a) the multi-group ethnic identity measure (including ethnic search and affirmation subscales) and other-group orientation for ethnic identity, (b) centrality to assess racial identity, and (c) Africentrism to measure cultural identity. Perceived benefits and barriers related to genetic testing included: (1) pros/advantages (including family-related pros), (2) cons/disadvantages (including family-related cons, stigma and confidentiality concerns), and (3) concerns about abuses of genetic testing., Results: In multivariate analyses, several ethnic identity elements showed significant, largely positive relationships to perceived benefits about genetic testing for breast and/or ovarian cancer risk, the exception being ethnic search, which was positively associated with cons/disadvantages, in general, and family-related cons/disadvantages. Racial identity (centrality) showed a significant association with confidentiality concerns. Cultural identity (Africentrism) was not related to perceived benefits and/or barriers., Conclusions: Ethnic and racial identity may influence perceived benefits and barriers related to genetic testing for breast and/or ovarian cancer risk among at-risk women of African descent. Genetic counseling services may want to take into account these factors in the creation of culturally-appropriate services which best meet the needs of this heterogenous population., (Copyright © 2011 S. Karger AG, Basel.)

Women who receive positive or uninformative BRCA1/2 test results face a number of decisions about how to manage their cancer risk. The purpose of this study was to prospectively examine the effect of receiving a positive versus uninformative BRCA1/2 genetic test result on the perceived pros and cons of risk-reducing mastectomy (RRM) and risk-reducing oophorectomy (RRO) and breast cancer screening. We further examined how perceived pros and cons of surgery predict intention for and uptake of surgery. 308 women (146 positive, 162 uninformative) were included in RRM and breast cancer screening analyses. 276 women were included in RRO analyses. Participants completed questionnaires at pre-disclosure baseline and 1-, 6-, and 12-months post-disclosure. We used linear multiple regression to assess whether test result contributed to change in pros and cons and logistic regression to predict intentions and surgery uptake. Receipt of a positive BRCA1/2 test result predicted stronger pros for RRM and RRO (P < 0.001), but not perceived cons of RRM and RRO. Pros of surgery predicted RRM and RRO intentions in carriers and RRO intentions in uninformatives. Cons predicted RRM intentions in carriers. Pros and cons predicted carriers' RRO uptake in the year after testing (P < 0.001). Receipt of BRCA1/2 mutation test results impacts how carriers see the positive aspects of RRO and RRM and their surgical intentions. Both the positive and negative aspects predict uptake of surgery.

Background: Latinas are less likely to use genetic services (counseling and testing) for hereditary breast and/or ovarian cancer risk compared to other ethnic groups. Meanwhile, little is known about barriers to genetic counseling among Latinas at increased risk of inherited breast cancer., Methods: A two-phase pilot study was conducted to examine interest, barriers and beliefs about BRCA genetic counseling among at-risk Latinas in New York City and explore the potential for developing a culturally-tailored narrative educational tool for use in future studies. Phase 1 included quantitative telephone interviews (N = 15) with bilingual participants with a personal diagnosis at a young age and/or family history of breast and/or ovarian cancer. Quantitative results informed development of a narrative prototype educational presentation viewed by a subset of participants (N = 10) in Phase 2 focus groups., Results: Despite barriers, including lack of awareness/knowledge, concerns related to learning cancer risks of family members, and concerns about cost/health insurance, participants reported positive attitudes, beliefs and interest in learning about BRCA genetic counseling. Further, significant increases in knowledge were demonstrated from pre-post presentation (p = 0.04)., Conclusion: There is an unmet need to educate at-risk Latinas about BRCA genetic counseling. Culturally-tailored educational materials including narratives may increase knowledge about BRCA genetic counseling among this underserved group. The effectiveness of these approaches should be tested in future research with larger samples.

Objectives: The aim of our study was to identify individual factors that may predict which subset of prostate cancer patients is more likely to experience emotional distress., Design and Methods: Prostate cancer survivors identified through the Icelandic Cancer Registry (N=184), completed questionnaires measuring emotional distress, dispositional emotional expressivity and social constraints., Results: A significant positive relationship was observed between perceived social constraints and distress (e.g. anxiety, depression, and intrusive thoughts), but only among prostate cancer survivors with higher levels of dispositional emotional expressivity., Conclusions: The results of our study suggest that it might be important to assess individual differences as well as social environmental factors in the treatment of distress among prostate cancer survivors.

Objective: To determine the prevalence of fathers' attendance at pretest cancer genetic counseling sessions with mothers undergoing BRCA1/2 genetic testing for hereditary breast/ovarian cancer (HBOC) risk, and to identify psychosocial and other correlates of fathers' attendance., Methods: One hundred and twenty-one fathers of minor-age children who were spouses/partners of women (mothers) undergoing such counseling and testing were recruited, completed a behavioral self-report survey, and provided data about their sociodemographic backgrounds, father-child cancer communication histories, parenting relationship quality, and information-seeking and perceived knowledge., Results: A total of 27.3% of fathers attended pretest cancer genetic counseling with mothers. Compared to fathers who did not attend pretest cancer genetic counseling, those who did had stronger parenting alliances with mothers, were more likely to have sought out information about BRCA1/2 testing, and felt more informed about testing. In an adjusted logistic regression model of session attendance, the strength of the parenting alliance was associated with a 6% increase in the likelihood of attending genetic counseling (odds ratio [OR]=1.06, 95% confidence interval [CI]=1.01, 1.12, p<.05) and greater perceived knowledge about BRCA1/2 testing was associated with a four-fold increase in the likelihood of session attendance (OR=4.03, CI=1.77, 9.37, p<.001)., Conclusion: One in three fathers attend pretest cancer genetic counseling with mothers undergoing BRCA1/2 testing; those who do have closer parenting relationships and are more informed about BRCA1/2 testing., Practice Implications: When possible, providers should discuss mothers including fathers in cancer genetic counseling sessions as this may affect outcomes of HBOC genetic counseling and testing.

Objective: Rising health disparities are increasingly evident in relation to use of genetic services (including genetic counseling and testing) for breast cancer risk, with women of African descent less likely to use genetic services compared with Whites. Meanwhile, little is known regarding potential within-group acculturation and psychological differences underlying perceived barriers to genetic testing among women of African descent., Methods: Hypothesized contributions of acculturation factors and breast cancer-specific distress to perceived barriers to genetic testing were examined with a statistical analysis of baseline data from 146 women of African descent (56% US born and 44% foreign born) meeting genetic breast cancer risk criteria and participating in a larger longitudinal study that included the opportunity for free genetic counseling and testing. Perceived barriers assessed included: (1) anticipation of negative emotional reactions, (2) stigma, (3) confidentiality concerns, (4) family-related worry, and (5) family-related guilt associated with genetic testing., Results: In multivariate analyses, being foreign born was a significant predictor of anticipated negative emotional reactions about genetic testing (beta=0.26; SE=0.11; p=0.01). Breast cancer-specific distress scores (avoidance symptoms) were positively related to anticipated negative emotional reactions (beta=0.02; SE=0.005; p=<0.0001), confidentiality concerns (beta=0.02; SE=0.01; p=0.02), and family-related guilt (beta=0.02; SE=0.01; p=0.0009) associated with genetic testing., Conclusions: Results suggest an influence of acculturation and breast cancer-specific distress on perceived barriers to genetic testing among women of African descent. The potential utility of culturally tailored genetic counseling services taking into account such influences and addressing emotional and psychological concerns of women considering genetic testing for breast cancer should be investigated.

Objective: Predictive genetic testing for hereditary breast/ovarian cancer risk (BRCA1/2 testing) is not recommended for minor children due to its lack of immediate medical benefit and potential psychological risk. Yet, tested mothers are often interested in learning about their children's cancer risks via pediatric BRCA1/2 testing, raising a host of bioethical concerns. However, no reliable or valid tool exists to formally gauge parents' interest in such testing. The aim of this study was to develop and evaluate a new measure for use in genetic research and consultation, known as the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS)., Methods: After pretest genetic counseling and provision of a blood sample for BRCA1/2 testing, the P-TAS was administered to 187 mothers of children between 8- and 21-years-old. The measure was also given to 96 of the mothers' nontested co-parents. Analyses of the factor structure and psychometric properties of the measure were performed in mothers and confirmed in their co-parents., Results: The two factors of the P-TAS, labeled Attitudes and Beliefs (Factor 1) and Decision Making and Communication (Factor 2), accounted for 62.9% of the variance and were reliable (Cronbach's coefficient alphas =.70 and .90, respectively); the structure and properties were largely confirmed among co-parents. Validity was indicated through its convergence with related constructs., Conclusions: This new tool may be integrated into genetic counseling research to better assess parents' attitudes and interests in pediatric BRCA1/2 testing. Such information may help guide ongoing discussions about the appropriateness of testing in adolescent or young adult children.

Recent research underscores the need for increasing use of genetic testing for cancer risk in Latinos. This study examined the influence of acculturation on attitudes, beliefs about and familiarity with genetic testing for cancer risk in a community-based sample of Latinas in East Harlem, New York City (N = 103). Multivariate linear regression models analyzed the relationship of acculturation to: (1) familiarity (2) perceived benefits (3) perceived barriers and (4) concerns about abuses of genetic testing for cancer risk. Controlling for sociodemographic factors, results revealed that with increasing acculturation Latinas were more familiar with genetic testing (beta = 1.62, SE = 0.72, p = 0.03), more likely to cite perceived benefits (beta = 1.67, SE = 0.79, p = 0.04), and less likely to report perceived barriers related to genetic testing (beta = -2.76, SE = 1.64, p = 0.10). Study results may help inform the development of culturally-appropriate health education outreach materials and programs targeted to increase awareness, knowledge and understanding about genetic testing for cancer risk within Latinas.

Background: African American breast cancer survivors are less adherent to guidelines for post-treatment breast cancer surveillance compared to White survivors. Survivors in Spirit (SIS) is an intervention that addresses this problem through lay health workers (LHWs)., Methods: African American women were trained as LHWs using a structured curriculum. Trainees' intervention knowledge was assessed before and after training., Results: There was a substantial increase in the mean percentage of correct items from pre- to post-test for the trainees as a group., Conclusions: LHWs can be effectively prepared to conduct interventions focusing on the complexities of breast cancer recurrence and surveillance.