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Background : There are more than 1500 UK health helplines in operation, yet we have scant knowledge about the resources in place to support the seeking and delivering of cancer-related telephone help and support. This research aimed to identify and describe cancer and cancer-related helpline service provision: the number of helplines available, the variety of services provided, and the accessibility of those services. Method : This study used online national questionnaire survey sent to 95 cancer and cancer-related helplines in the United Kingdom. Results : A total of 69 (73%) of 95 surveyed cancer and cancer-related helplines completed the survey. Most helplines/organizations were registered charities, supported by donations; 73.5% of helplines had national coverage. Most helplines served all age-groups, ethnic groups, and men and women. Only 13.4% had a number that was free from landlines and most mobile networks, and 56.6% could only be contacted during working hours. More than 50% of helplines reported no provisions for callers with additional needs, and 55% had no clinical staff available to callers. Ongoing support and training for helpline staff was available but variable. Conclusion : Although cancer helplines in the United Kingdom offer reasonably broad coverage across the country, there are still potential barriers to accessibility. There are also opportunities to optimize the training of staff/volunteers across the sector. There are further prospects for helplines to enhance services and sustain appropriate and realistic quality standards.

BackgroundThe ability to identify men at genetically high-risk of prostate cancer (PrCa) would enable screening to be targeted at those most in need. This study explored the psychological impact (in terms of general and PrCa-specific worry and risk perceptions) on men with a family history of PrCa, undergoing prostate screening and genetic-risk profiling, within a research study. MethodsA prospective exploratory approach was adopted, incorporating a sequential mixed-method design. Questionnaires were completed at two time points to measure the impact of undergoing screening and genetic-risk profiling. In-depth interviews were completed in a subgroup after all study procedures were completed and analysed using a framework approach. ResultsNinety-five men completed both questionnaires, and 26 were interviewed. No measurable psychological distress was detectable in the group as a whole. The interview findings fell into two categories: feeling at risk' and living with risk'. The feeling of being at risk of PrCa is a part of men's lives, shaped by assumptions and information gathered over many years. Men used this information to communicate about PrCa risk to their peers. Men overestimate their risk of PrCa and have an innate assumption that they will develop PrCa. The interviews revealed that men experienced acute anxiety when waiting for screening results. ConclusionsPersonalised genetic-risk assessments do not prevent men from overestimating their risk of PrCa. Screening anxiety is common, and timeframes for receiving results should be kept to a minimum. Methods of risk communication in men at risk of PrCa should be the subject of future research. Copyright (c) 2015 John Wiley & Sons, Ltd.

The ability to identify men at genetically high-risk of prostate cancer (PrCa) would enable screening to be targeted at those most in need. This study explored the psychological impact (in terms of general and PrCa-specific worry and risk perceptions) on men with a family history of PrCa, undergoing prostate screening and genetic-risk profiling, within a research study.A prospective exploratory approach was adopted, incorporating a sequential mixed-method design. Questionnaires were completed at two time points to measure the impact of undergoing screening and genetic-risk profiling. In-depth interviews were completed in a subgroup after all study procedures were completed and analysed using a framework approach.Ninety-five men completed both questionnaires, and 26 were interviewed. No measurable psychological distress was detectable in the group as a whole. The interview findings fell into two categories: 'feeling at risk' and 'living with risk'. The feeling of being at risk of PrCa is a part of men's lives, shaped by assumptions and information gathered over many years. Men used this information to communicate about PrCa risk to their peers. Men overestimate their risk of PrCa and have an innate assumption that they will develop PrCa. The interviews revealed that men experienced acute anxiety when waiting for screening results.Personalised genetic-risk assessments do not prevent men from overestimating their risk of PrCa. Screening anxiety is common, and timeframes for receiving results should be kept to a minimum. Methods of risk communication in men at risk of PrCa should be the subject of future research.

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.

While there are numerous uncertainties surrounding prostate cancer's detection and treatment, more research focusing on the psychological needs of prostate patients is required. This study investigated the support and psychological care needs of men with prostate cancer. Patients were approached during urological oncology clinics and asked to complete the: Support Care Needs Survey (SCNS), Support Care Preferences Questionnaire, EORTC QLQ-C30 (Version 3) Measure plus Prostate Module, and the Hospital Anxiety and Depression Scale (HADS). Of the 249 patients meeting study entry criteria, there was an 89% response rate resulting in a cohort of 210 patients. The data showed that significant unmet need exists across a number of domains in the areas of psychological and health system/information. The more commonly reported needs were 'fears about cancer spreading (44%),' 'concerns about the worries of those close to you (43%),' and 'changes in sexual feelings (41%).' Half of all patients reported some need in the domain of sexuality, especially men younger than 65 years. Needs were being well met in the domain of patient care and support. A significant number of patients reported having used or desiring support services, such as information about their illness, brochures about services and benefits for patients with cancer (55%), a series of talks by staff members about aspects of prostate cancer (44%), and one-on-one counselling (48%). Quality of life (QoL) was most negatively impacted in those who: were < or =65 years old, had been diagnosed within one year, or had metastatic disease. Men < or =65 had decreased social functioning, greater pain, increased sleep disturbance, and were more likely to be uncomfortable about being sexually intimate. Patients recently diagnosed had increased fatigue, more frequent urination, greater disturbance of sleep, and were more likely to have hot flushes. Those with advanced disease scored lower on 12 out of 15 QoL categories. PSA level had no effect on QoL or anxiety/depression scores. Men with advanced disease had greater levels of depression and those < or =65 years old were more likely to be anxious. Although most men with prostate cancer seem to function quite well, a substantial minority report areas of unmet need that may be targets for improving care.

This paper describes clients' accounts of the benefits they derived from a short course of cancer counselling provided within a humanist framework. Three hundred and two clients who had attended at least one session of a short course of cancer counselling received an evaluation form, which incorporated both fixed-choice and open-ended questions. One hundred and forty two (47%) clients returned evaluation forms; those who had attended more sessions were significantly more likely to do so. Quantitative data were analysed using SPSS (Statistical Package for the Social Sciences) for Windows and qualitative data using a thematic approach. Almost all clients indicated that they felt they had benefited from counselling. Analysis of the open-ended questions identified nine main benefits of counselling and four key avenues or processes through which clients derived these benefits. Overall, counselling was seen as helping them to work through powerful thoughts and feelings and so to come to terms with cancer and to regain a sense of control in their lives. The benefits of a short course of counselling which clients identified reflect the aims of humanistic counselling which are not well captured by psychiatric assessments or most standard research instruments. In evaluating cancer counselling services, assessments which include these client-defined outcomes may provide a more sensitive way of gauging the value of counselling to a non-clinic population.