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Objective: To assess knowledge, satisfaction with information, decisional conflict and psychological morbidity amongst women diagnosed with ductal carcinoma in situ (DCIS) and to explore the factors associated with less knowledge and greater confusion about DCIS., Methods: A cross-sectional survey of women diagnosed with DCIS in Australia (N=144)., Results: This study found misunderstanding and confusion amongst women diagnosed with DCIS and a desire for more information about their breast disease. Approximately half of participants worried about their breast disease metastasizing; approximately half expressed high decisional conflict; 12% were anxious and 2% were depressed. Logistic regression analysis demonstrated that worry about dying from the breast disease was significantly associated with not knowing that DCIS could not metastasize (OR 3.9; 95% CI 1.03-14.25); and confusion about whether DCIS could metastasize was significantly associated with dissatisfaction with information (OR 12.5; 95% CI 3.8-40.2)., Conclusion: Good communication about how DCIS differs from invasive breast cancer is essential to alleviating the confusion and worry amongst women with DCIS., Practice Implications: Recommendations about how best to communicate a diagnosis of DCIS, including the uncertainties, are needed to guide health professionals to promote better understanding about DCIS and increase the well-being of women with DCIS., (Copyright © 2010. Published by Elsevier Ireland Ltd.)

Despite evidence of benefit, little is know about Australian women's access to and perceptions of specialist breast nurse (SBN) care. The aims of this study were to: explore access to SBNs by Australian women with breast cancer; identify factors associated with receiving systematic SBN care (at least 3 SBN contacts including preoperatively and postoperatively and at follow-up); and explore the impact of systematic SBN care on women's perceptions of treatment and support. A population-based sample of 544 women with early breast cancer was randomly selected through state and territory cancer registries. Participants completed a structured telephone interview. Over half (52%) of the women had no SBN contact and only 11% received systematic SBN care. Factors associated with systematic SBN care were being treated in a public hospital and receiving systemic adjuvant therapy. Women who received systematic SBN care were more likely to report receiving enough support for themselves and their families, and enough information about where to get more support or counseling and the costs of treatment. In conclusion, systematic SBN contact was uncommon in this population-based sample but positively influenced women's perceptions of care, particularly in relation to the provision of support.

The purpose of the current study was to access the degree to which the support needs of women with a newly diagnosed, early invasive, primary breast cancer and their families are being met. A random sample of 544 women diagnosed with early breast cancer was recruited to participate in a telephone survey via state and territory cancer registries. Sixteen percent of women reported not receiving enough support during their diagnosis and treatment, and only 65% of these women reported that their families received enough support. The primary sources of support for women and their families were medical practitioners (eg, surgeons, oncologists, and general practitioner) with very few women or family members utilizing mental health professionals. Given the importance of adequate support when being diagnosed and treated for breast cancer, urgent attention needs to be paid to training medical professionals in providing appropriate support and referrals for their patients.

For women with early breast cancer, multidisciplinary care has the potential to reduce mortality, improve quality of life and reduce healthcare costs. In Australia, the diversity of healthcare delivery settings and types of care means that a single model of multidisciplinary care may not be appropriate. The "Principles of multidisciplinary care" were developed to provide a flexible framework for the provision of multidisciplinary care in Australia. The Principles emphasise five key elements: the team, communication, access to the full range of therapies, standards of care and involvement of the woman. This flexible, principle-based approach to multidisciplinary care is unique. The Principles have the potential to be applied to other cancers and other chronic diseases.

Although the benefits of many psychosocial support strategies in improving well being in women with breast cancer have been demonstrated, few women receive these programs as part of routine care. This paper provides some recommendations, based on experience in Australia, about how access to evidence-based supportive care strategies might be improved through modification of health systems. It demonstrates the paucity of research about the costs and health service implications of psychosocial support strategies, which is vital to health planning and service delivery change. It outlines the systematic approach taken in Australia to improving psychosocial support nationally by: the development of research reviews; preparation of guidelines about supportive care; implementation of programs to foster the adoption of guidelines through modification of policy, health service delivery and clinician training; and monitoring programs. Coalitions of government, health care professionals and consumers are key to effective lobbying for change. If all women with breast cancer are to receive better supportive care, there is a need for approaches which: refocus the research effort in psycho-oncology; develop more strategic approaches to generating change in health systems and health policy and foster partnerships to advocate for improved resources., (Copyright 2003 John Wiley & Sons, Ltd.)

The objective of this study was to examine the feasibility, implementation, acceptability and impact of an evidence-based specialist breast care nurse (SBN) model of care in Australia. Primary data were collected from four diverse Australian breast cancer treatment centres over a 12-month period. The design was a multicentre demonstration project. Information about the provision of care and patient needs was collected through prospective logs. Structured interviews were conducted with women who received the SBN intervention (N = 167) and with a control group of women treated prior to the intervention period (N = 133). Health professionals (N = 47) were interviewed about their experience of the SBN. Almost all women had contact with an SBN at five scheduled consultations and 67% of women in the intervention group requested at least one additional consultation with the SBN. Women in the intervention group were more likely to receive hospital fact sheets and to be told about and participate in clinical trials. Ninety-eight per cent of women reported that the availability of an SBN would affect their choice of hospital, with 48% indicating that they would recommend only a hospital with a SBN available. Health professionals reported that SBNs improved continuity of care, information and support for the women, and resulted in more appropriate referrals and use of the time of other members of the team. In conclusion, the SBN model is feasible and acceptable within diverse Australian treatment centres; there is evidence that some aspects of care were improved by the SBN.

The purpose of the current study was to assess the practical and psychosocial needs of rural women with early breast cancer in Australia and recommend strategies to ensure equity in availability and access to cancer treatment for all women. A random sample of 204 rural women diagnosed with early breast cancer was recruited to participate in a telephone survey via state and territory cancer registries. Although the majority of women were satisfied with their provision of information overall, less than a third of participants were provided with specific information on assistance for rural women. Findings also revealed that only 47% of the women who had to travel for treatment received financial assistance, and 13% of these women had difficulty organizing or claiming financial assistance. Furthermore, only 10% of women found social workers to be a source of support.

Objective: To determine women's preferences for and reported experience with medical test decision-making., Design: Computer-assisted telephone survey., Setting and Participants: Six hundred and fifty-two women resident in households randomly selected from the New South Wales electronic white pages., Main Outcome Measures: Reported and preferred test and treatment (for comparison) decision-making, satisfaction with and anxiety about information on false results and side-effects; and effect of anxiety on desire for such information., Results: Overall most women preferred to share test (94.6%) and treatment (91.2%) decision-making equally with their doctor, or to take a more active role, with only 5.4-8.9% reporting they wanted the doctor to make these decisions on their behalf. This pattern was consistent across all age groups. In general, women reported experiencing a decision-making role that was consistent with their preference. Women who had a usual doctor were more likely to report experiencing an active role in decision-making. More women reported receiving as much information as they wanted about the benefits of tests and treatment than about the side-effects of tests and treatment. Most women wanted information about the possibility of false test results (91.5%) and test side-effects (95.6%), but many reported the doctor never provided this information (false results = 40.0% and side-effects = 31.3%). A substantial proportion said this information would make them anxious (false results = 56.6% and side-effects = 43.1%), but reported they wanted the information anyway (false results = 77.6% and side-effects = 88.1%)., Conclusions: Women prefer an active role in test and treatment decision-making. Many women reported receiving inadequate information. If so, this may jeopardize informed decision-making.

Objectives: To explore women's experience of being diagnosed with ductal carcinoma in situ (DCIS) in relation to the following: response to the diagnosis; understanding about the diagnosis; satisfaction with information; satisfaction with the level of involvement in treatment decision-making and satisfaction with support services., Design: An explorative descriptive qualitative design was used to facilitate an in-depth exploration of women's experiences., Setting and Participants: Five focus group interviews were conducted in New South Wales (NSW), Australia, involving 26 women diagnosed with DCIS., Results: DCIS is a non-invasive breast disease, that in most cases will not recur if treated, and cannot of itself metastasize to other parts of the body. However, this study found that women were confused about whether or not they had cancer that could result in death. Women's confusion was compounded by the use of the term "carcinoma" and by the recommendation of treatments such as mastectomy. Women's confusion was not alleviated by appropriate information, with most women reporting dissatisfaction with the information they received specifically about DCIS., Conclusions: This study identifies that a diagnosis of DCIS has a significant psychological impact on women. The communication challenges highlighted in this study are not only relevant to DCIS but to any other disease in which the natural history is uncertain and the evidence about treatment effectiveness is still emerging. Further research is needed in areas such as DCIS to explore the difficulties experienced in doctor-patient communication and their impact on patient outcomes, and how to optimize doctor-patient communication.

There is growing trend in health care for patients and consumers to have an active voice in all decisions related to their care. The purpose of the current study was to assess the effectiveness of an advocacy training programme for breast cancer consumers in Australia. The participants included 51 women who attended a 3-day advocacy training programme in three different states across Australia. Participants completed a pre- and post-questionnaire at 6 months follow-up to assess their involvement in breast cancer advocacy activities and organizations. Findings revealed a significant increase in participants' involvement in serving as a member of a board or committee, working on clinical trials recruitment issues, working on patient resources, and involvement in breast cancer advocacy groups after completing the training programme. However, no change was found in other key advocacy areas, such as, lobbying for change or reviewing research protocols. Implications for future advocacy training programmes and research were discussed.

The purpose of this study was to determine whether a targeted intervention could improve primary care practitioners' concordance with guidelines regarding management of women with breast symptoms. One hundred and twelve practitioners from randomly selected areas around Australia prospectively audited their investigations for each woman with a new breast symptom over two 12-week periods, before and five months after the release of national guidelines. Between the two audits, doctors received feedback on practice in relation to peers and attended one seminar in their local areas led by specialists from the Royal Australasian College of Physicians and the Royal Australasian College of Surgeons. For five recommendations, there were statistically significant improvements at the second audit in line with standard Investigation of a New Breast Symptom (INBS) guidelines. All these were for investigations of breast lumps. At first audit, there were seven recommendations where practitioners were already managing more than 80% of women in accordance with the INBS, and where there were no statistically significant increases in concordance at second audit. Another six recommendations had lower concordance with the recommendations prior to the release of the guidelines and did not significantly improve at second audit. These tended to be for less-common presentations and where clinical findings were not consistent with other test results. We concluded that a targeted intervention improved physician concordance with current best advice for investigating women who present with new breast symptoms in a primary care setting. Further educational programs are needed to improve investigations for rarer symptoms, and to enhance physicians' confidence in the results of their clinical examinations.

Background: The overall aims of the present study were to identify differences among women with early breast cancer who were discharged early from the hospital (within 48 h) and those who remained for routine admission in relation to demographic variables, informational needs, supportive needs, complications and satisfaction with care., Methods: A random sample of 544 women diagnosed with early breast cancer was recruited to participate in a telephone survey via State and Territory cancer registries., Results: Findings revealed little significant difference among women participating in early discharge and routine care in relation to demographics variables, informational needs, complication and satisfaction with care. Women participating in early discharge, however, were significantly less likely to be seen by a specialist breast care nurse or a volunteer with breast cancer., Conclusions: Prior to establishing early discharge as routine care, it is essential to establish clear health policy relating to early discharge and adequate follow-up services for women with breast cancer.

Objective: Breast cancer is the most common fatal cancer among Australian women. This study aimed to provide an accurate national picture of women's understanding of breast cancer incidence, fatality and risk., Method: A telephone survey explored the knowledge and perceptions of a sample of 2,935 Australian women in relation to breast cancer incidence, fatality, risk factors, risk perception and level of concern., Results: Australian women were well aware of breast cancer in general terms, however, there were major aspects of incidence and risk which were poorly understood. Only 5% of women nominated age as a risk factor, and only one-third were able to make an approximately correct estimate of the incidence of breast cancer in Australia., Conclusions and Implications: Recommendations for future information campaigns include targeting understanding of lifetime risk of developing breast cancer, age as a risk factor, survival from breast cancer and the need to separately address the perceptions of older versus younger women.

Objective: The aim of this study was to survey women aged 40 to 49 to determine their perceptions of the benefits and the downsides of screening mammography for women in this age group, and the degree of support for targeting women aged 40 to 49 in the national BreastScreen program., Method: Telephone interviews were used in a two-stage survey of 200 women aged 40 to 49 from across Australia in 1997. Information that outlined some of the evidence for costs and effectiveness of screening in this age group was sent to the women after the first survey., Results: Women saw both benefits and downsides of mammography screening in this age group. Although the proportion of women reporting downsides increased from (39%) to (69%), after reading the information most women (62%) still thought the benefits outweigh the downsides of offering a screening program to women aged 40-49 and the majority (66%) supported the notion of government funding for this. Most women agreed that women aged 40 to 49 have to be informed about all the advantages and disadvantages of screening before making a decision to attend., Conclusion: If women aged 40-49 were to be actively recruited to a government screening program, an information campaign should be undertaken that outlines the benefits and downsides of screening mammography to foster informed participation., Implications: Community views are a helpful contribution to debates about policy when existing data are ambiguous.

Objective: To explore the opinions of surgeons about the NHMRC clinical practice guidelines for the management of early breast cancer (the Guidelines) and their views about and use of the accompanying Consumer's guide., Design: Cross-sectional telephone survey., Participants and Setting: Surgeons throughout Australia who manage breast cancer, designated as "breast" or "general" (members or non-members of the Royal Australasian College of Surgeons' Section of Breast Surgery) and "urban" or "rural"., Results: Among 150 respondents (64% response rate) more than 80% of surgeons reported having read all or most of the Guidelines and believed they were useful in improving women's management and wellbeing, easy to understand, evidence-based, a good summary of recent evidence, and that they would assist agreement between women and healthcare providers. Surgeons agreed with most of the recommendations in the Guidelines, but 26% disagreed that "women should ideally be treated by a specialist who treats a large number of similar patients and who has access to the full range of treatment options in a multidisciplinary setting". In terms of medicolegal implications, 41% believed that the Guidelines would protect clinicians, while, of the 37% of surgeons who believed that they would expose doctors to increased problems, significantly more breast than general surgeons believed this (50% v. 19%; P < 0.001). Only 37% of surgeons routinely gave the Consumer's guide to all or more than half their patients., Conclusions: Surgeons are generally positive about the Guidelines, but certain issues should be addressed if they are to be optimally implemented, including confusion about the medicolegal implications, perceived difficulties with providing multidisciplinary care and poor use of the Consumer's guide.

Purpose: The purpose of this review is to consider the issues for women related to participation in clinical trials that evaluate the management of breast cancer and provide some recommendations for future initiatives to address the identified areas of concern., Methods: The National Health and Medical Research Council (NHMRC) National Breast Cancer Centre hosted an international workshop to address the question "Clinical Trials in Breast Cancer: Should Women Take Part?" We also reviewed the literature on informed participation in clinical trials that was identified in a broadly based search that covered Medline, PsycLIT, and HealthPlan from 1986 to 1996., Results and Conclusion: When women are asked to participate in a clinical trial, they are faced with a number of questions and dilemmas. These include issues related to the conduct and ethical considerations of the trial; the effect of participation or nonparticipation on treatment; the roles of the doctor as clinician and as researcher; the process of informed consent; the timing of the request for participation; and the benefits and costs of participation. A number of steps are identified that could help women decide whether to participate in clinical trials. These include provision of community information about clinical trials; establishment of independent brokers and registers for clinical trials; consumer review of information and protocols and involvement in trials; review of the role of ethics committees; collection of data about the proportion of women currently recruited to clinical trials, their reasons for participating or declining, and their views about the process of recruitment and participation; models for optimal practice in recruiting women to clinical trials and encouraging ongoing participation in trials; evidence-based communication skills training for clinicians to teach skills to inform women adequately of clinical trial participation; and auspicing and promotion of trials by an independent agency.

Objective: To establish the extent of women's knowledge of mammographic screening, particularly in relation to the national screening program, BreastScreen Australia, and to estimate the proportion of women who are participating in screening both within and outside BreastScreen Australia., Design and Setting: Validated prospective telephone survey of women aged 30-69 years selected at random from across Australia., Participants: 2935 women with no previous breast cancer diagnosis., Results: The adjusted response rate was 64%. Almost 90% of women had heard of the national program; only 1% correctly stated that screening is for asymptomatic women. 60% correctly identified the current recommended age of starting screening is about 50 years of age; 26% thought screening should begin at about 40 years of age. Approximately 60% correctly reported that the recommended screening interval is every two years; 27% thought screening should be done annually. 55% reported ever having had a mammogram, and 37% reported having had at least one screening mammogram. Among women in the target age group (50-69 years) about 70% reported ever having had a screening mammogram, and about 50% reported having had a screening mammogram within the national program in the last two years. Among women aged 40-49 years, 29% reported ever having had a screening mammogram, and 22% reported having been screened in the last two years., Conclusions: Awareness of the national screening program is high, but some women do not know the purpose of screening, the target age group and the recommended screening interval. Compliance with screening is good among women in the target age group; many women in their 40s are also participating in screening.

The National Health and Medical Research Council National Breast Cancer Centre was established to improve outcomes for women by reviewing the literature, developing best practice guidelines and resources and developing a national monitoring system. Its broad terms of reference meant that it was important at the outset to identify priorities for action. The Centre used a national consultative process based on nominal groups to identify priorities. Thirteen consultative workshops were held with over 300 participants including women diagnosed with breast cancer, some of their families and health professionals. There was a high level of agreement between workshops in priorities identified, indicating that the nominal group process results in reliable data. A sub-sample of participants surveyed after the workshops reported being highly satisfied with their participation in the process. The findings indicate that the nominal group process can be useful in selecting priorities for action in health.

Background: If mammographic screening is to reduce mortality from breast cancer, it is essential that a high proportion of the target population attend for screening. In order to achieve this, effective recruitment strategies are needed. This paper reports two trials of recruitment strategies for mammographic screening involving eight communities in rural New South Wales (NSW), Australia., Methods: Each trial involved two matched pairs of towns in the Hunter Valley region of NSW. Towns were randomly allocated to intervention, receiving either mass media promotion or community participation in Trial 1 and community participation or family physician involvement in Trial 2., Results: In Trial 1, significantly higher attendance rates were observed in the two towns that received the community participation intervention compared with their matched media promotion towns (63% vs 34%, P < 0.001 and 51% vs 34%, P < 0.01). In Trial 2, a significantly higher attendance rate was observed in one town that received the family physician involvement intervention compared with its matched town which received the community participation intervention (68% vs 51%, P < 0.01). There was no significant difference in attendance in the other pair of towns (68% vs 58%, P = 0.11)., Conclusions: Both community participation and family practitioner involvement are more promising strategies for the promotion of attendance at mammographic screening facilities than media promotion alone.

Studies demonstrate that general practitioners have a vital role in the management of women with breast cancer. This includes encouraging women over 35 years to practise breast self examination, those over 40 to have annual breast checks, and those over 50 to have two-yearly mammography.