Research to date has mainly focused on the short‐term psychological impact of genetic risk counselling for breast cancer. This study aimed to explore the long‐term consequences for women of being informed about an increased risk of breast cancer in terms of: the effect on their everyday lives, their coping strategies and their unmet needs in terms of the current service. The participants were 25 women with a family history of breast cancer who had received genetic risk counselling and had consequently been receiving clinical surveillance for at least 2 years. They took part in one of seven telephone focus groups and subsequently completed a feedback questionnaire. Transcripts of the focus groups were qualitatively analysed by three independent researchers with inter‐rater agreement between pairs of raters ranging from Kappa=0.61–0.79. Six key issues emerged from the data, which provide an important insight into the long‐term consequences of living with an increased risk of breast cancer concerning: (1) psychological adaptation, (2) behavioural adaptation, (3) family issues, (4) clinical surveillance, (5) provision of information, and (6) peer support. These findings, together with the quantitative results of the feedback questionnaire, have clinical implications that require further investigation in larger scale quantitative research. Copyright © 2000 John Wiley & Sons, Ltd.

This study compared the psychological impact of two models of breast cancer genetics services in South East Scotland. One hundred and seventy general practices were randomised to refer patients to the existing standard regional service or the novel communitybased service. Participants completed postal questionnaires at baseline (n ¼ 373), 4 weeks (n ¼ 276) and 6 months (n ¼ 263) to assess perceived risk of breast cancer, subjective and objective understanding of genetics and screening issues, general psychological distress, cancer worry and health behaviours. For participants in both arms of the trial, there were improvements in subjective and objective understanding up to 4 weeks which were generally sustained up to 6 months. However, improvements in subjective understanding for the women at low risk of breast cancer (i.e. not at significantly increased risk) in the standard service arm did not reach statistical significance. Cancer worry was significantly reduced at 6 months for participants in both arms of the trial. The two models of cancer genetics services tested were generally comparable in terms of the participants' psychological outcomes. Therefore, decisions regarding the implementation of the novel community-based service should be based on the resources required and client satisfaction with the service. Media attention to scientific developments in cancer genetics has resulted in a greatly increased demand for cancer genetics services. These services aim to identify individuals who have inherited a significantly increased risk of cancer in order to counsel them about their risks and to offer appropriate risk management to reduce morbidity and mortality. There is a challenge to provide this information in ways that the lay public can utilise to inform their health-care choices without causing undue psychological distress. Individuals who are not at significantly increased risk also need appropriate reassurance without precluding an appropriate vigilance to symptoms of sporadic cancer. There is also a challenge to respond to these new developments within existing health-care budgets. Internationally, there is a lack of consensus about how best to deliver cancer genetic services (Steel et al, 1999) and an urgent need for empirical evidence to inform service development.A survey of 22 regional cancer genetics services in the UK in 1998 reported that the predominant users of these services were women with a family history of breast cancer (Wonderling et al, 2001). Of the women who are diagnosed with breast cancer, about 10% report having a family history of the disease (Narod, 2002). Of these cases, only a small proportion will be due to inherited genetic mutations in one of the known susceptibility genes, BRCA1 and BRCA2. These genetic mutations give rise to increased lifetime risks of developing the disease, often at an earlier age than is the norm for sporadically occurring cases.Brain et al (2000) showed that there was no difference in the effectiveness of multidisciplinary cancer genetics teams and b...

This study aimed to compare the impact of two versions of a psychoeducational written intervention on cancer worry and objective knowledge of breast cancer risk-related topics in women who had been living with an increased risk of familial breast cancer for several years. Participants were randomised to three conditions: scientific and psychosocial information pack (Group 1), scientific information pack only (Group 2) or standard care control (Group 3). They completed postal questionnaires at baseline (n ¼ 163) and 4 weeks (n ¼ 151). As predicted, there was a significant decrease in cancer worry for Group 1, but not Group 2. Objective knowledge significantly improved for both Group 1 and Group 2 as expected, but not Group 3. However, there was an unpredicted decline in cancer worry for Group 3. This study supports the value of a scientific and psychosocial information pack in providing upto-date information related to familial risk of breast cancer for long-term attendees of a familial breast cancer clinic. Further research is warranted to determine how the information pack could be incorporated into the existing clinical service, thus providing these women with the type of ongoing psychosocial support that many familial breast cancer clinics are currently lacking. British Journal of Cancer (2004) In recent years, growing numbers of women with a family history of breast cancer have sought genetic risk counselling to gain information about their risk of developing the disease. This increase in public awareness of family history as a risk factor for breast cancer results from scientific advances in understanding cancer genetics and growing media attention to breast cancer. Genetic testing for breast cancer susceptibility was initially expected to be widely available and informative for all women identified as being at increased risk due to family history. However, it is apparent that at present genetic testing is not an option for the majority of these women for whom a mutation in a known breast cancer susceptibility gene has not been identified in an affected relative. In the absence of proven methods to prevent or reduce the risk of breast cancer, the clinical management of these women is focused primarily on breast cancer screening.Large numbers of women under the age of 50 years are currently attending familial breast cancer clinics on a regular basis for clinical surveillance. As these women are faced with multiple chronic uncertainties regarding their personal risk of developing breast cancer and the effectiveness of risk management, the potential for adverse psychosocial effects is clear. However, psychosocial support or educational information out with regular breast cancer screening appointments (unless specifically requested) are not routinely provided for long-term attendees of many familial breast cancer clinics, including the South East Scotland familial breast cancer clinic in Edinburgh.There is limited psychosocial research in women who have been living with an increased risk of familial breast can...