Ambiguity in a masculine world: Being a BRCA1/2 mutation carrier and a man with prostate cancer.

OBJECTIVE: Increased risk of prostate cancer (PCa) is observed in men with BRCA1/BRCA2 mutations. Sex and gender are key determinants of health and disease although unequal care exists between the sexes. Stereotypical male attitudes are shown to lead to poor health outcomes. METHODS: Men with BRCA1/2 mutations and diagnosed with PCa were identified and invited to participate in a qualitative interview study. Data were analysed using a framework approach. "Masculinity theory" was used to report the impact of having both a BRCA1/2 mutation and PCa. RESULTS: Eleven of 15 eligible men were interviewed. The umbrella concept of "Ambiguity in a Masculine World" was evident. Men's responses often matched those of women in a genetic context. Men's BRCA experience was described, as "on the back burner" but "a bonus" enabling familial detection and early diagnosis of PCa. Embodiment of PCa took precedence as men revealed stereotypical "ideal" masculine responses such as stoicism and control while creating new "masculinities" when faced with the vicissitudes of having 2 gendered conditions. CONCLUSION: Health workers are urged to take a reflexive approach, void of masculine ideals, a belief in which obfuscates men's experience. Research is required regarding men's support needs in the name of equality of care.

Reproductive decision-making in young female carriers of a BRCA mutation.

STUDY QUESTION: How do young women, who were identified as carrying a BRCA gene mutation before they had children, approach reproductive decision-making and what are their attitudes towards reproductive genetic testing? SUMMARY ANSWER: Reproductive decision-making within the context of cancer risk is complex and influenced by personal experiences of cancer. Younger women were not concerned with reproductive decision-making at the time of their genetic test; however, the impact on subsequent reproductive decision-making was considerable and left them with unanticipated dilemmas, such as having children who would be at risk of inheriting cancer predisposition, timing risk-reducing surgery and changing perceptions of responsibility. WHAT IS KNOWN ALREADY: Individuals carrying gene mutations predisposing to hereditary breast/ovarian cancer have concerns about passing on the gene mutation to children. STUDY DESIGN, SIZE, DURATION: Qualitative methodology and thematic analysis. PARTICIPANTS/MATERIALS, SETTING, METHODS: Data were collected through semi-structured interviews with 25 women aged 18-45 who had received a positive result for a BRCA1 or BRCA2 gene mutation while childless. MAIN RESULTS AND THE ROLE OF CHANCE: Analysis revealed four central themes: (i) the impact of cancer on reproductive decision-making; (ii) motivation for genetic testing; (iii) risk management and timing of planning children; and (iv) optimism for future medical advancements. LIMITATIONS, REASONS FOR CAUTION: This study explores the views of female BRCA carriers. Further research should explore the views of couples, men, and include samples with greater ethnic and social diversity. WIDER IMPLICATIONS OF THE FINDINGS: This evidence highlights the need for reproductive decision-making to be addressed at the time of pretest genetic counselling. More information should be provided on reproductive options as well as counselling/support to guide women's reproductive decision-making and prenatal testing options at the time they undertake genetic testing. STUDY FUNDING/COMPETING INTEREST(S): This research was supported by Cancer Research UK (Number C1226 A7920) and NIHR support to the Biomedical Research Centre at The Institute of Cancer Research and RMH. The authors have no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: Not applicable.

Current perspectives on the surgical management of mandibular third molars in the United Kingdom: the need for further research.

This survey of expert opinion regarding the management of mandibular third molar (M3M) impaction and its clinical sequelae was circulated to all members of the British Association of Oral and Maxillofacial Surgeons (BAOMS). It was completed by 289 clinicians who reported treating 60003 patients annually. Respondents included 199 (69%) specialists and 58 (20%) primary care clinicians. Most (99%) of the clinicians treated at least one M3M with complete surgical removal (CSR) annually. Only 69% performed one or more coronectomies (COR). Advocates of coronectomy reported lower rates of inferior alveolar nerve (IAN) injury, but IAN, lingual nerve, and adjacent second molar damage were rare, occurring in less than 0.5% of cases, with small differences between the COR and CSR groups. Although these differences are not statistically significant, they are likely to be clinically important. Also, the COR group would have comprised mainly high-risk teeth, while the CSR group would include many teeth at low risk of complications. This might have skewed the results. Those clinicians performing no coronectomies cited three main reasons for being low adopters of COR: the lack of irrefutable evidence to support its benefit, the increased need for a second operation, and more non-IAN complications. Although COR may prevent permanent IAN damage in high-risk cases, this paper highlights clinicians' views that there is a gap in evidence and knowledge to support COR. As a result, 47% of the clinicians surveyed recommended, and were prepared to participate in, further studies to determine the effectiveness and safety of COR.

Communicating genetics research results to families: problems arising when the patient participant is deceased.

OBJECTIVES: This study explores communication within families of clinically significant genetics research results, after the death of the patient participant. BRCA2 mutations were found in several men after their death from prostate cancer. Spouses were given the results in a genetic counselling session and asked to inform relatives. METHODS: Cross-sectional, qualitative exploratory study. Interviews with 13 relatives, including informers and recipients of the information, were analysed using interpretative phenomenological analysis. RESULTS: Dissemination was hampered when communication channels between relatives were limited, because of family rifts or socially distant or problematic relationships. When informing other branches of the family, relatives approached individuals in the generation of the deceased man, regardless of their risk status, who were then responsible for informing younger relatives. Most people informed by a relative did not seek genetic counselling. The informing relative may not have sufficient authority for the information either to be taken seriously or to challenge individual constructions about the aetiology of cancer. This impeded information transmission to further at-risk relatives. Most participants knew of relatives who had not been told about their cancer risk. CONCLUSIONS: The implications of this limited efficiency of information transfer among relatives are discussed in the context of a potential role for genetics services in contacting at-risk relatives directly.

Women's Free-text Comments on their Quality of Life: An Exploratory Analysis from the UK Standardisation of Breast Radiotherapy (START) Trials for Early Breast Cancer.

AIMS: Exploratory analysis of patients' unsolicited written comments in the first 2 years of the Standardisation of Breast Radiotherapy (START) trial quality of life study highlighted a potential effect of non-treatment-related problems on the ratings and interpretation of patient self-reported questionnaires. At 5 years of follow-up all eligible subjects were invited to write comments to further explore these findings. MATERIALS AND METHODS: Using inductive qualitative methods informed by the exploratory analysis, comments were allocated to relevant themes. Key patient-reported outcome measures (PROMs), clinical and demographic factors were collated for patients who did and did not comment at 5 years and comparisons between the groups explored. RESULTS: Of 2208 women completing baseline PROMs, 482 proffered comments from 0 to 24 months, forming nine distinct themes, including chronic conditions, life events and psychosocial concerns. At 5 years, 1041/1727 (60.3%) women contributed comments, of whom 500 randomly selected participants formed the sample for analysis. Findings revealed comorbidity, impaired physical functioning and psychosocial problems as key themes, with prevalent adverse effects from local and systemic treatments. Eight new themes emerged at 5 years, including ageing, concerns about future cancer and positive aspects of care. Women commenting were better educated, slightly older and more likely to have had chemotherapy compared with non-commenters. They had significantly worse PROM scores for global health and key quality of life domains relevant to the difficulties they revealed. CONCLUSIONS: Difficult personal circumstances and other health concerns affected many women's PROM ratings at 5 years of follow-up, in addition to ongoing cancer treatment effects. Greater attention to multiple sources of distress and adversity could facilitate personalised care and aid interpretation of PROMs.

The development of an EORTC quality of life questionnaire to assess chemotherapy-induced peripheral neuropathy: the QLQ-CIPN20.

Chemotherapy-induced peripheral neuropathy (CIPN) is a common phenomenon, often resulting in serious limitations in daily functioning and compromised quality of life. Currently available toxicity grading systems typically use a combination of clinical and paraclinical parameters and relies on the judgment of clinicians and/or nurses. However, because many of the symptoms of CIPN are subjective in nature, it is only logical that an assessment of CIPN be based, at least in part, on patient self-report data. We report on the development of a patient self-report questionnaire, the CIPN20, intended to supplement the core quality of life questionnaire of the European Organization for Research and Treatment of Cancer (EORTC). Following EORTC guidelines, relevant CIPN-related issues were identified from a literature survey and interviews with health professionals (n=15) and patients (n=112). The resulting 20-item questionnaire was pre-tested in three languages and four countries and is currently being examined in a large, international clinical trial. The EORTC CIPN20 should provide valuable information on CIPN-related symptoms and functional limitations of patients exposed to potentially neurotoxic chemotherapeutic and/or neuroprotective agents.

Attitudes of patients to randomised clinical trials of cancer therapy.

The aim of this study was to test an instrument which might be useful for doctors in explaining the randomisation procedure to an individual patient. The sample comprised 323 patients with cancer attending for out-patient appointments and/or chemotherapy treatment in two major cancer centres in the U.K. 315 patients completed a self-report questionnaire--The Attitudes to Randomised Trials Questionnaire (ARTQ). The results show that the majority of subjects 287 (91.1%) believe that patients should be asked to take part in medical research, but only 242 (76.8%) would be prepared to take part in a study comparing two treatments. If treatment was randomised, only 141 (44.8%) would agree to participate. When given further information about the randomisation procedure, 119 (68.4%) of the 174 (55.2%) who initially said 'no' to randomisation or who were unsure, would change their minds and take part in a trial. The ARTQ discriminated between three categories of patient with the following prevailing attitudes: (a) those who seem comfortable with the concept of randomisation; (b) those with some concerns, who with fuller explanation are prepared to consider randomisation; and (c) those firmly against randomisation and participation in trials whatever information is provided. Prior knowledge of patients' attitudes might assist communication about trials and encourage more doctors to approach eligible patients.

Who provides health care to children and adolescents in the United States?

Face-to-face visits by children and adolescents in office-based practice in the mid-1970s were studied. Pediatricians, family physicians, and general practitioners accounted for 35%, 6%, and 30%, respectively, of all child visits. Although 40% to 45% of preventive and medical encounters were with pediatricians, only 12% of visits for minor surgery, 20% of visits for psychosocial problems, and 9% of visits for combined medical-surgical reasons were to pediatricians. Only in very young children did pediatricians provide a substantial proportion of care for each of the types of visits. For some common diagnoses (acne, refractive error) most care was provided by specialists other than primary care specialists, but less than 16% of all preventive care visits (including routine eye examinations) was provided by specialists other than primary care physicians. A substantial proportion of the prenatal care and management of minor trauma was provided by family physicians and general practitioners. Although the limitations of the study (including an average response rate of 55%, exclusion of certain specialties and institutional physicians, sampling at different times of the year, lack of control for area of location of practice, and lack of information about response rates of different types of physicians within each specialty) preclude definitive conclusions, the findings raise important questions for future study.

Benz[a]anthracene-induced alterations in the metabolic activation of benzo[a]pyrene by hamster embryo cell cultures.

Co-administration of benz[a]anthracene (BA) with benzo[a]pyrene (B[a]P) to hamster embryo cell cultures for 24 h resulted in a decrease in the metabolism of benzo[a]pyrene by 40%, a decrease in the level of binding of B[a]P to DNA by 70% and a 10-fold reduction in mutation induction in a hamster embryo cell-mediated V79 cell mutation assay. This data indicates that the biological effects of co-administration of BA with B[a]P result from inhibition of the metabolic activation of B[a]P rather than induction of enzymes that detoxify the B[a]P.

Evaluation of adjuvant psychological therapy in patients with testicular cancer: randomised controlled trial.

OBJECTIVE: To determine the efficacy of adjuvant psychological therapy in patients with testicular cancer and to compare the characteristics and psychosocial outcomes of men who agreed to participate with those who declined to participate in a randomised trial of psychological intervention. DESIGN: Newly diagnosed patients were asked to participate in a randomised trial of psychological support compared with standard medical care. Participants and non-participants completed self assessment questionnaires at baseline and at 2, 4 and 12 months. SETTING: Testicular Tumour Unit of the Royal Marsden Hospital. SUBJECTS: 73 of 184 (40%) eligible patients agreed to enter the randomised trial (participants) and 81 (44%) declined to participate but agreed to complete further assessments (non-participants). 30 patients wanted no further contact with the researchers. OUTCOME MEASURES: Hospital anxiety and depression scale, psychosocial adjustment to illness scale, Rotterdam symptom checklist, mental adjustment to cancer scale. Only scores on the hospital anxiety and depression scale are reported for evaluating treatment efficacy. RESULTS: 111 of 184 (60%) eligible men declined to participate in the trial. Patients with stage I disease were most likely to refuse to participate. A patient was less likely to participate if he had low volume disease and was receiving no further treatment. Likelihood of participation was associated with stage of disease and with type of primary treatment (P < 0.001 for heterogeneity). Patients with early stage disease (P < 0.001) and fewer physical symptoms (P < 0.001) were less likely to participate. Psychosocial factors associated with participation included anxious preoccupation regarding disease (P = 0.01). There were no differences in outcome between participants and non-participants during follow up. Patients seemed to gain little benefit from adjuvant psychological therapy. At 2 months change from baseline favoured the treated group in the anxiety subscale (mean difference between groups -1.41 (95% confidence interval -2.86 to 0.03)). This was not sustained when adjusted for factors related to the disease. By 12 months change from baseline seemed to favour the control group (mean difference between groups 1.66 (-0.18 to 3.50)). CONCLUSIONS: Patients with testicular cancer seem to have considerable coping abilities. Those who declined to participate in the trial differed from those who participated. Those who agreed to participate may comprise the clinical group who perceive a need for psychological support. No evidence was found to indicate a need for routinely offering adjuvant psychological therapy.

Cancer patients' information needs and information seeking behaviour: in depth interview study.

OBJECTIVES: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. DESIGN: Qualitative study based on in-depth interviews. SETTING: Outpatient oncology clinics at a London cancer centre. PARTICIPANTS: 17 patients with cancer diagnosed in previous 6 months. MAIN OUTCOME MEASURES: Analysis of patients' narratives to identify key themes and categories. RESULTS: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable. CONCLUSIONS: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

Styles of care provided to children in the United States: a comparison by physician specialty.

This study was based on findings from a national survey of physicians that was conducted from 1975 to 1977. The data concern face-to-face encounters with children in the ambulatory care setting. Over one half of the practices of pediatricians consisted of infants and preschoolers, whereas well over 50 percent of the child patients of other types of physicians were 10 to 19 years old. The proportion of visits dealing with a problem already under care was consistently greater for specialists other than primary care physicians; the proportion of visits for preventive care was much lower in the practices of these specialists than in primary care practice. These findings suggest that other specialists are functioning in ways different from primary care physicians. As compared with family physicians, pediatricians performed more diagnostic tests for all diagnoses and more immunizations and counseling about growth and development, were more likely to have seen children previously for problems other than the one dealt with in the visit under consideration, and were more likely to report that no specific therapy was required (except for well-child care). However, family physicians did more counseling about family and sex matters than pediatricians, were much more likely to have seen musculoskeletal and skin problems among 10- to 19-year-old patients, and were much more likely to have administered cauterization, cryotherapy, or suturing for skin problems. Family physicians provided more counseling of all types and did more minor surgical procedures than general practitioners. These and other findings show the existence of systematic differences across specialties in the care of children, even for apparently similar problems.

Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.

When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. The breast and ovarian cancer risk was unknown to the living relatives. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. Those who were fully aware of the BRCA2 results and implications for themselves felt they had benefited from the information, irrespective of whether or not they had elected for genetic testing, because of the consequent availability of surveillance programs. Initial anxiety upon learning about the BRCA2 result was alleviated by genetic counselling. Factors influencing those who have not engaged with the information included scepticism related to the relative who attempted to inform them, young age and fear of cancer. Those who had not sought genetic counselling did not attempt further dissemination, and some were not undergoing regular screening. Implications for informed consent in genetics research programs, and the requirement for genetic counselling when research results are disclosed, are discussed.

Feasibility of familial PSA screening: psychosocial issues and screening adherence.

This study examined factors that predict psychological morbidity and screening adherence in first-degree relatives (FDRs) taking part in a familial PSA screening study. Prostate cancer patients (index cases - ICs) who gave consent for their FDRs to be contacted for a familial PSA screening study to contact their FDRs were also asked permission to invite these FDRs into a linked psychosocial study. Participants were assessed on measures of psychological morbidity (including the General Health Questionnaire; Cancer Worry Scale; Health Anxiety Questionnaire; Impact of Events Scale); and perceived benefits and barriers, knowledge; perceived risk/susceptibility; family history; and socio-demographics. Of 255 ICs, 155 (61%) consented to their FDRs being contacted. Of 207 FDRs approached, 128 (62%) consented and completed questionnaires. Multivariate logistic regression revealed that health anxiety, perceived risk and subjective stress predicted higher cancer worry (P = 0.05). Measures of psychological morbidity did not predict screening adherence. Only past screening behaviour reliably predicted adherence to familial screening (P = 0.05). First-degree relatives entering the linked familial PSA screening programme do not, in general, have high levels of psychological morbidity. However, a small number of men exhibited psychological distress.