BRCA awareness and testing experience in the UK Jewish population: a qualitative study.

BACKGROUND: 1 in 40 UK Jewish individuals carry a pathogenic variant in BRCA1/BRCA2. Traditional testing criteria miss half of carriers, and so population genetic testing is being piloted for Jewish people in England. There has been no qualitative research into the factors influencing BRCA awareness and testing experience in this group. This study aimed to explore these and inform improvements for the implementation of population genetic testing. METHODS: Qualitative study of UK Jewish adults who have undergone BRCA testing. We conducted one-to-one semistructured interviews via telephone or video call using a predefined topic guide, until sufficient information power was reached. Interviews were audio-recorded, transcribed verbatim and interpreted using applied thematic analysis. RESULTS: 32 individuals were interviewed (28 carriers, 4 non-carriers). We interpreted five themes intersecting across six time points of the testing pathway: (1) individual differences regarding personal/family history of cancer, demographics and personal attitudes/approach; (2) healthcare professionals' support; (3) pathway access and integration; (4) nature of family/partner relationships; and (5) Jewish community factors. Testing was largely triggered by connecting information to a personal/family history of cancer. No participants reported decision regret, although there was huge variation in satisfaction. Suggestions were given around increasing UK Jewish community awareness, making information and support services personally relevant and proactive case management of carriers. CONCLUSIONS: There is a need to improve UK Jewish community BRCA awareness and to highlight personal relevance of testing for individuals without a personal/family history of cancer. Traditional testing criteria caused multiple issues regarding test access and experience. Carriers want information and support services tailored to their individual circumstances.

The BARCODE1 Pilot: a feasibility study of using germline single nucleotide polymorphisms to target prostate cancer screening.

OBJECTIVES: To assess the feasibility and uptake of a community-based prostate cancer (PCa) screening programme selecting men according to their genetic risk of PCa. To assess the uptake of PCa screening investigations by men invited for screening. The uptake of the pilot study would guide the opening of the larger BARCODE1 study recruiting 5000 men. SUBJECTS AND METHODS: Healthy males aged 55-69 years were invited to participate via their general practitioners (GPs). Saliva samples were collected via mailed collection kits. After DNA extraction, genotyping was conducted using a study specific assay. Genetic risk was based on genotyping 130 germline PCa risk single nucleotide polymorphisms (SNPs). A polygenic risk score (PRS) was calculated for each participant using the sum of weighted alleles for 130 SNPs. Study participants with a PRS lying above the 90th centile value were invited for PCa screening by prostate magnetic resonance imaging (MRI) and biopsy. RESULTS: Invitation letters were sent to 1434 men. The overall study uptake was 26% (375/1436) and 87% of responders were eligible for study entry. DNA genotyping data were available for 297 men and 25 were invited for screening. After exclusions due to medical comorbidity/invitations declined, 18 of 25 men (72%) underwent MRI and biopsy of the prostate. There were seven diagnoses of PCa (38.9%). All cancers were low-risk and were managed with active surveillance. CONCLUSION: The BARCODE1 Pilot has shown this community study in the UK to be feasible, with an overall uptake of 26%. The main BARCODE1 study is now open and will recruit 5000 men. The results of BARCODE1 will be important in defining the role of genetic profiling in targeted PCa population screening. Patient Summary What is the paper about? Very few prostate cancer screening programmes currently exist anywhere in the world. Our pilot study investigated if men in the UK would find it acceptable to have a genetic test based on a saliva sample to examine their risk of prostate cancer development. This test would guide whether men are offered prostate cancer screening tests. What does it mean for patients? We found that the study design was acceptable: 26% of men invited to take part agreed to have the test. The majority of men who were found to have an increased genetic risk of prostate cancer underwent further tests offered (prostate MRI scan and biopsy). We have now expanded the study to enrol 5000 men. The BARCODE1 study will be important in examining whether this approach could be used for large-scale population prostate cancer screening.

Contemporary beliefs surrounding the menarche: a pilot study of adolescent girls at a school in middle England.

Despite menarche affecting half of the population, there is limited research into its effects and limited dialogue within UK society. As Relationships and Sex Education (RSE), which encompasses issues like puberty, becomes compulsory in all schools in England for the first time, understanding the impact of menarche is vital. This study aimed to explore the beliefs about and experiences of menarche amongst adolescent girls. Semi-structured interviews were conducted with eleven participants aged 16-18 attending a secondary school in Warwickshire. A thematic analysis was carried out, with emerging themes discussed between two researchers.All participants had received some RSE teaching at school, although many felt that it did not provide sufficient detail. These sessions also occurred too late for some participants who had already reached menarche. A range of emotions were recalled at this milestone; while some girls felt prepared and mature, others reported disbelief and shame. Mothers were the most important person for guidance, while conversations with fathers about menstruation were generally avoided. GPs were not considered a source of advice, despite some participants experiencing significant symptoms and menstrual irregularity.It is clear that the impact of menarche should not be underestimated and stigma surrounding menstruation still exists today. To address these issues, suggested improvements include mixed gender teaching to promote open discussions and making the role of GPs more visible to the adolescent community.

Presence and predictors of anxiety disorder onset following cancer diagnosis among anxious cancer survivors.

PURPOSE: Despite cancer survivors' frequent endorsement of anxiety symptoms, assessing the full range of anxiety disorders (AD), their timing of onset relative to cancer diagnosis, co-morbidity with mood disorder, and predictors of post-cancer onset, is rare or absent to date. This study provides a step toward addressing these gaps. METHODS: Cancer survivors at re-entry after primary treatment completion who screened positively for anxiety symptoms (N = 133) and sought care through an intervention trial completed standardized diagnostic interviews, dimensional assessment of disorder severity, and timing of disorder onset relative to cancer diagnosis. We evaluated sociodemographic and medical predictors of developing a first AD after cancer diagnosis. RESULTS: Most ADs began after cancer diagnosis (58%); for 68% of affected patients, this represented their first AD episode. The most common was generalized anxiety disorder (GAD; 41%), where "cancer-focused GAD" was distinguished from "typical GAD"; the next most common were specific phobia (14%) and social anxiety disorder (13%). A minority (31%) of ADs were comorbid with major depression. Relative to having no AD, experiencing more lingering treatment side effects predicted developing a first AD after cancer diagnosis. Relative to having an AD that began before cancer diagnosis, reporting a higher cancer stage predicted developing a first AD after diagnosis. CONCLUSIONS: Cancer survivors at re-entry seeking care for anxiety symptoms manifested a broad range of ADs which most commonly developed after cancer diagnosis and were prompted by the experience of cancer. Such disorders represent an unusually late-life, cancer-linked etiology that warrants further investigation and clinical attention.

Online Provision of BRCA1 and BRCA2 Health Information: A Search Engine Driven Systematic Web-Based Analysis.

BRCA genetic testing is available for UK Jewish individuals but the provision of information online for BRCA is unknown. We aimed to evaluate online provision of BRCA information by UK organisations (UKO), UK Jewish community organisations (JCO), and genetic testing providers (GTP). Google searches for organisations offering BRCA information were performed using relevant sets of keywords. The first 100 website links were categorised into UKOs/JCOs/GTPs; additional JCOs were supplemented through community experts. Websites were reviewed using customised questionnaires for BRCA information. Information provision was assessed for five domains: accessibility, scope, depth, accuracy, and quality. These domains were combined to provide a composite score (maximum score = 5). Results were screened (n = 6856) and 45 UKOs, 16 JCOs, and 18 GTPs provided BRCA information. Accessibility was high (84%,66/79). Scope was lacking with 35% (28/79) addressing >50% items. Most (82%, 65/79) described BRCA-associated cancers: breast and/or ovarian cancer was mentioned by 78%(62/79), but only 34% (27/79) mentioned ≥1 pancreatic, prostate, melanoma. Few websites provided carrier frequencies in the general (24%,19/79) and Jewish populations (20%,16/79). Only 15% (12/79) had quality information with some/minimal shortcomings. Overall information provision was low-to-moderate: median scores UKO = 2.1 (IQR = 1), JCO = 1.6 (IQR = 0.9), and GTP = 2.3 (IQR = 1) (maximum-score = 5). There is a scarcity of high-quality BRCA information online. These findings have implications for UK Jewish BRCA programmes and those considering BRCA testing.

Content analysis of Reddit posts about coadministration of selective serotonin reuptake inhibitors and psilocybin mushrooms.

RATIONALE: Treatments with the serotonergic psychedelic psilocybin are being investigated for multiple neuropsychiatric disorders. Because many patients with these disorders use selective serotonin reuptake inhibitors (SSRIs), understanding interactions between psilocybin and SSRIs is critical for evaluating the safety, efficacy, and scalability of psilocybin-based treatments. Current knowledge about these interactions is limited, as most clinical psilocybin research has prohibited concomittant SSRI use. OBJECTIVES: We aimed to explore potential interactions between psilocybin and SSRIs by characterizing peoples' real-world experiences using psilocybin mushrooms and SSRIs together. METHODS: We conducted a systematic search of Reddit for posts describing psilocybin mushroom and SSRI coadministration. We identified 443 eligible posts and applied qualitative content analysis to each. RESULTS: 8% of posts reported negative physical or psychological effects resulting from coadministration. These included 13 reports that may reflect serotonin toxicity, and 1 concerning for a psychotic/manic episode. 54% of posts described reduced intensity of the acute psilocybin experience, but 39% reported unchanged intensity with SSRI coadministration. CONCLUSIONS: Psilocybin's interactions with SSRIs are likely complex and may depend on multiple factors. Prospective studies are needed to evaluate whether psilocybin treatments are reliably safe and effective in the setting of SSRI use.

Acceptability, Feasibility, and Efficacy Potential of a Multimodal Acceptance and Commitment Therapy Intervention to Address Psychosocial and Advance Care Planning Needs among Anxious and Depressed Adults with Metastatic Cancer.

Background: Adults with metastatic cancer frequently report anxiety and depression symptoms, which may impact health behaviors such as advance care planning (ACP). Objective: The study leveraged acceptance and commitment therapy (ACT), an evidence-based approach for reducing distress and improving health behaviors, and adapted it into a multimodal intervention (M-ACT) designed to address the psychosocial and ACP needs of anxious and depressed adults with metastatic cancer. The study evaluated M-ACT's acceptability, feasibility, and efficacy potential. Design: The study was designed as a single-arm intervention development and pilot trial. Setting/Subjects: The trial enrolled 35 anxious or depressed adults with stage IV cancer in community oncology clinics, with a referred-to-enrolled rate of 69% and eligible-to-enrolled rate of 95%. Measurements: M-ACT alternated four in-person group sessions with three self-paced online sessions. Acceptability and feasibility were assessed through enrollment, attendance, and satisfaction ratings. Outcomes and theorized intervention mechanisms were evaluated at baseline, midintervention, postintervention, and two-month follow-up. Results: Participant feedback was used to refine the intervention. Of participants starting the intervention, 92% completed, reporting high satisfaction. One-quarter did not begin M-ACT due to health declines, moving, or death. Completers showed significant reductions in anxiety, depression, and fear of dying and increases in ACP and sense of life meaning. In this pilot, M-ACT showed no significant impact on pain interference. Increases in two of three mechanism measures predicted improvement on 80% of significant outcomes. Conclusions: The M-ACT intervention is feasible, acceptable, and shows potential for efficacy in community oncology settings; a randomized trial is warranted.

Implications for cancer genetics practice of pro-actively assessing family history in a General Practice cohort in North West London.

At present cancer genetics referrals are reactive to individuals asking for a referral and providing a family history thereafter. A previous pilot study in a single General Practice (GP) catchment area in North London showed a 1.5-fold increase in breast cancer risk in the Ashkenazi Jewish population compared with the non-Ashkenazi mixed population. The breast cancer incidence was equal in the Ashkenazim in both pre- and postmenopausal groups. We wanted to investigate the effect of proactively seeking family history data from the entire female population of the practice to determine the effect on cancer genetics referral. Objectives To determine the need for cancer genetics intervention for women in a single GP catchment area. (1) to determine the incidence and strength of family history of cancer in women aged over 18 in the practice, (2) to offer cancer genetics advice and determine the uptake of counselling in those with a positive family history, (3) to identify potential BRCA1/BRCA2 gene mutation carriers who can be offered clinical follow up with appropriate translational research studies. Design Population-based cohort study of one General Practice female population. Participants Three hundred and eighty-three women over the age of 18 from one General Practice who responded to a questionnaire about family history of cancer. The whole female adult GP population was the target and the total number sampled was 3,820. Results 10% of patients completed the questionnaire (n = 383). A family history of cancer was present in 338 cases, 95 went on to have genetic counselling or had previously had counselling and 47 were genetically tested. We identified three carriers of an Ashkenazi Jewish founder mutation in BRCA1. Conclusions Response rate to a family history questionnaire such as that used in genetics centres was low (10%) and other approaches will be needed to proactively assess family history. Although the Ashkenazim are present in 39% of the GP catchment area, 62% of those who returned a family history questionnaire were from this ethnic group and of those returned, 44% warranted referral to a cancer genetics unit. In the non Ashkenazim, the questionnaire return rate was 38% and 18% of those warranted referral to cancer genetics.

Perspectives on obesity programs at children's hospitals: insights from senior program administrators.

OBJECTIVE: The obesity epidemic has resulted in an increasing number of children needing multidisciplinary obesity treatment. To meet this need, pediatric obesity programs have arisen, particularly in children's hospitals. In 2008, the National Association of Children's Hospitals and Related Institutions (NACHRI) convened FOCUS on a Fitter Future, a group drawn from NACHRI member institutions, to investigate the needs, barriers, and capacity-building in these programs. METHODS: Senior administrators of the 47 NACHRI member hospitals that completed an application to participate in the FOCUS group were invited to complete a Web-based survey. The survey targeted 4 key areas: (1) perceived value of the obesity program; (2) funding mechanisms; (3) administrative challenges; and (4) sustainability of the programs. RESULTS: Nearly three-quarters of the respondents reported that their obesity programs were integrated into their hospitals' strategic plans. Obesity programs added value to their institutions because the programs met the needs of patients and families (97%), met the needs of health care providers (91%), prevented future health problems in children (85%), and increased visibility in the community (79%). Lack of reimbursement (82%) and high operating costs (71%) were the most frequently cited challenges. Respondents most frequently identified demonstration of program effectiveness (79%) as a factor that is necessary for ensuring program sustainability. CONCLUSIONS: Hospital administrators view tackling childhood obesity as integral to their mission to care for children. Our results serve to inform hospital clinicians and administrators as they develop and implement sustainable pediatric obesity programs.

A population-based audit of ethnicity and breast cancer risk in one general practice catchment area in North London, UK: implications for practice.

OBJECTIVES: To conduct a pilot population-based study within a general practice catchment area to determine whether the incidence of breast cancer was increased in the Ashkenazi population. DESIGN: Population-based cohort study. SETTING: A single general practice catchment area in North London. PARTICIPANTS: 1947 women over the age of 16 who responded to a questionnaire about ethnicity and breast cancer. MAIN OUTCOME MEASURES: Incidence of breast cancer, ethnicity. RESULTS: This study showed a 1.5-fold (95% CI 0.93-2.39) increase in breast cancer risk in the Ashkenazim compared with the non-Ashkenazi white population. The increased incidence was for both premenopausal and postmenopausal breast cancer (expected incidence pre:post is 1:4 whereas in the Ashkenazim it was 1:1; 51 and 52% of cases respectively). This increase was not shown in the Sephardim. Asians had a reduction in incidence (OR = 0.44; 95% CI 0.10-1.89). Results were adjusted for other risk factors for breast cancer. CONCLUSION: This study showed a 1.5-fold increase in breast cancer rates in Ashkenazim compared with the non-Jewish white population when adjusted for age (i.e. corrections were made to allow comparison of age groups) and this is not observed in the Sephardic population. The proportion of premenopausal breast cancer was just over double that of the general population. This is the first general practice population-based study in the UK to address this issue and has implications for general practitioners who care for patients from the Ashkenazi community.