Randomised trial of population-based BRCA testing in Ashkenazi Jews: long-term secondary lifestyle behavioural outcomes.

Objective: Ashkenazi-Jewish (AJ) population-based BRCA testing is acceptable, cost-effective and amplifies primary prevention for breast & ovarian cancer. However, data describing lifestyle impact are lacking. We report long-term results of population-based BRCA testing on lifestyle behaviour and cancer risk perception.

Stepped approach to improving sexual function after gynaecological cancer: the SAFFRON feasibility RCT.

Background: Women affected by gynaecological cancer are often unaware of the sexual consequences of both the cancer and its treatment. Most do not receive appropriate advice or help to recover sexual function, and the effect on their sexuality may be profound, both physically and emotionally. However, several potential therapies can be effective in helping recover some sexual engagement and change self-perception around sex.

Attitudes towards a programme of risk assessment and stratified management for ovarian cancer: a focus group study of UK South Asians' perspectives.

Objective: Population-based risk assessment, using genetic testing and the provision of appropriate risk management, could lead to prevention, early detection and improved clinical management of ovarian cancer (OC). Previous research with mostly white British participants found positive attitudes towards such a programme. The current study aimed to explore the attitudes of South Asian (SA) women and men in the UK with the aim of identifying how best to implement such a programme to minimise distress and maximise uptake.

Anticipated health behaviour changes and perceived control in response to disclosure of genetic risk of breast and ovarian cancer: a quantitative survey study among women in the UK.

Background: Genetic risk assessment for breast cancer and ovarian cancer (BCOC) is expected to make major inroads into mainstream clinical practice. It is important to evaluate the potential impact on women ahead of its implementation in order to maximise health benefits, as predictive genetic testing without adequate support could lead to adverse psychological and behavioural responses to risk disclosure.

Objective: To examine anticipated health behaviour changes and perceived control to disclosure of genetic risk for BCOC and establish demographic and person-specific correlates of adverse anticipated responses in a population-based sample of women.

Health care professionals' attitudes towards population-based genetic testing and risk-stratification for ovarian cancer: a cross-sectional survey.

Background: Ovarian cancer is usually diagnosed at a late stage when outcomes are poor. Personalised ovarian cancer risk prediction, based on genetic and epidemiological information and risk stratified management in adult women could improve outcomes. Examining health care professionals' (HCP) attitudes to ovarian cancer risk stratified management, willingness to support women, self-efficacy (belief in one's own ability to successfully complete a task), and knowledge about ovarian cancer will help identify training needs in anticipation of personalised ovarian cancer risk prediction being introduced.

Impact of a decision aid about stratified ovarian cancer risk-management on women's knowledge and intentions: a randomised online experimental survey study.

Background: Risk stratification using genetic and other types of personal information could improve current best available approaches to ovarian cancer risk reduction, improving identification of women at increased risk of ovarian cancer and reducing unnecessary interventions for women at lower risk. Amounts of information given to women may influence key informed decision-related outcomes, e.g.

Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk among ethnic minority groups: a systematic review.

Background: Genetic testing for risk of hereditary cancer can help patients to make important decisions about prevention or early detection. US and UK studies show that people from ethnic minority groups are less likely to receive genetic testing. It is important to understand various groups' awareness of genetic testing and its acceptability to avoid further disparities in health care.

Ovarian Cancer Follow-up: A Preliminary Comparison of 2 Approaches.

Objective: The aim of the study was to perform a preliminary comparison of quality of life (QoL) and patient satisfaction in individualized nurse-led follow-up versus conventional medical follow-up in ovarian cancer.

Methods: One hundred twelve women who received a diagnosis of ovarian, fallopian tube, or peritoneal cancer, completed primary treatment by surgery alone or with chemotherapy, irrespective of outcome with regard to remission, and expected survival of more than 3 months. Fifty-seven participants were randomized to individualized follow-up and 55 patients to conventional follow-up.

Inviting end-of-life talk in initial CALM therapy sessions: A conversation analytic study.

Objective: To examine how end-of-life talk is initiated in CALM therapy sessions with advanced cancer patients.

Methods: Conversation analysis was used to systematically examine the sequences where talk about death was raised in the first sessions of ten patients.

Results: Open questions about the patients' experiences, feelings or understanding in the context of talk about their troubles, were found to regularly elicit talk concerning end-of-life.

Genetic testing and personalized ovarian cancer screening: a survey of public attitudes.

Background: Advances in genetic technologies are expected to make population-wide genetic testing feasible. This could provide a basis for risk stratified cancer screening; but acceptability in the target populations has not been explored.

Methods: We assessed attitudes to risk-stratified ovarian cancer (OC) screening based on prior genetic risk assessment using a survey design.

Cluster-randomised non-inferiority trial comparing DVD-assisted and traditional genetic counselling in systematic population testing for BRCA1/2 mutations.

Background: Newer approaches to genetic counselling are required for population-based testing. We compare traditional face-to-face genetic counselling with a DVD-assisted approach for population-based BRCA1/2 testing.

Methods: A cluster-randomised non-inferiority trial in the London Ashkenazi Jewish population.

Adjusting the frequency of mammography screening on the basis of genetic risk: Attitudes among women in the UK.

Purpose: To explore public attitudes towards modifying frequency of mammography screening based on genetic risk.

Methods: Home-based interviews were carried out with a population-based sample of 942 women aged 18-74 years in the UK. Demographic characteristics and perceived breast cancer (BC) risk were examined as predictors of support for risk-stratified BC screening and of the acceptability of raised or lowered screening frequency based on genetic risk, using multivariate logistic regression.

Cost-effectiveness of population screening for BRCA mutations in Ashkenazi jewish women compared with family history-based testing.

Background: Population-based testing for BRCA1/2 mutations detects the high proportion of carriers not identified by cancer family history (FH)-based testing. We compared the cost-effectiveness of population-based BRCA testing with the standard FH-based approach in Ashkenazi Jewish (AJ) women.

Methods: A decision-analytic model was developed to compare lifetime costs and effects amongst AJ women in the UK of BRCA founder-mutation testing amongst: 1) all women in the population age 30 years or older and 2) just those with a strong FH (≥10% mutation risk).

Population testing for cancer predisposing BRCA1/BRCA2 mutations in the Ashkenazi-Jewish community: a randomized controlled trial.

Background: Technological advances raise the possibility of systematic population-based genetic testing for cancer-predisposing mutations, but it is uncertain whether benefits outweigh disadvantages. We directly compared the psychological/quality-of-life consequences of such an approach to family history (FH)-based testing.

Methods: In a randomized controlled trial of BRCA1/2 gene-mutation testing in the Ashkenazi Jewish (AJ) population, we compared testing all participants in the population screening (PS) arm with testing those fulfilling standard FH-based clinical criteria (FH arm).

Population-based genetic risk prediction and stratification for ovarian cancer: views from women at high risk.

There is an opportunity to improve outcomes for ovarian cancer (OC) through advances in risk stratification, early detection and diagnosis. A population-based OC genetic risk prediction and stratification program is being developed. A previous focus group study with individuals from the general population showed support for the proposed program.

Identifying hopelessness in population research: a validation study of two brief measures of hopelessness.

Objective: Hopelessness is an important construct in psychosocial epidemiology, but there is great pressure on the length of questionnaire measures in large-scale population and clinical studies. We examined the validity and test-retest reliability of two brief measures of hopelessness, an existing negatively worded two-item measure of hopelessness (Brief-H-Neg) and a positively worded version of the same instrument (Brief-H-Pos).

Design: Cohort study.

Annual outpatient hysteroscopy and endometrial sampling (OHES) in HNPCC/Lynch syndrome (LS).

Background: LS women have a 40-60% lifetime risk of endometrial cancer (EC). Most international guidelines recommend screening. However, data on efficacy are limited.

Telephone peer support for women with gynaecological cancer: benefits and challenges for supporters.

Objective: Despite the prevalence of one-to-one peer support programmes for people with cancer, little research has examined its impact on the supporters themselves. This qualitative study examined a telephone-delivered one-to-one peer support intervention for women with gynaecological cancer, focussing on supporters' subjective experiences of benefits or costs to themselves and challenges arising in the support process.

Methods: Semi-structured interviews (N = 24) were conducted with 16 women who provided peer support for 24 patients.

Family history and women with ovarian cancer: is it asked and does it matter?: An observational study.

Objective: The objective of the study was to determine how many women in an ovarian cancer (OC) study cohort had a family history (FH) recorded in their case notes and whether appropriate action was taken on the basis of that FH.

Methods: This was a review of patient case-note data of women in a randomized controlled trial of follow-up after primary treatment for OC. Available case notes of 114 women recruited at 3 UK gynecologic cancer centers in a 2-year period between January 2006 and 2008 were examined.

Telephone peer support for women with gynaecological cancer: recipients' perspectives.

Objective: Peer support is much valued by cancer patients. Previous research has focused on support groups, typically for women with breast cancer; little has addressed one-to-one support. This qualitative study examined a telephone-delivered one-to-one peer support intervention for women with gynaecological cancer, focusing on recipients' experiences of process and outcome.

Recruitment of newly diagnosed ovarian cancer patients proved challenging in a multicentre biobanking study.

Objective: To explore the challenges of recruiting ovarian cancer patients and healthy controls to a cancer biobanking study.

Study Design And Setting: The study was set up in gynecological cancer centers in 10 National Health Service trusts across the United Kingdom. Women were approached if they were undergoing investigations/awaiting treatment for ovarian cancer, had a previous diagnosis of ovarian cancer, or were attending for annual screening in an ovarian cancer screening trial.

Screening for distress and depression in cancer patients: is ultrashort depression screening a valid measure in the UK? A prospective validation study.

This study sought to validate the two-question (2Q) depression screen as a screening tool for psychological distress and depression against four criterion measures (Hospital Anxiety and Depression Scale [HADS], General Health Questionnaire-12, Brief Symptom Inventory-18 [BSI-18], and the distress thermometer) for a UK cancer population. We used a prospective cross-sectional study design. A consecutive sample of 399 outpatients from four outpatient oncology clinics and a palliative care day center in North London were initially identified.