Psychological distress and quality of life in lung cancer: the role of health-related stigma, illness appraisals and social constraints.

OBJECTIVE: Health-related stigma is associated with negative psychological and quality of life outcomes in lung cancer patients. This study describes the impact of stigma on lung cancer patients' psychological distress and quality of life and explores the role of social constraints and illness appraisal as mediators of effect. METHODS: A self-administered cross-sectional survey examined psychological distress and quality of life in 151 people (59% response rate) diagnosed with lung cancer from Queensland and New South Wales. Health-related stigma, social constraints and illness appraisals were assessed as predictors of adjustment outcomes. RESULTS: Forty-nine percent of patients reported elevated anxiety; 41% were depressed; and 51% had high global distress. Health-related stigma was significantly related to global psychological distress and quality of life with greater stigma and shame related to poorer outcomes. These effects were mediated by illness appraisals and social constraints. CONCLUSIONS: Health-related stigma appears to contribute to poorer adjustment by constraining interpersonal discussions about cancer and heightening feelings of threat. There is a need for the development and evaluation of interventions to ameliorate the negative effects of health-related stigma among lung cancer patients.

Analysing risk factors for poorer breast cancer outcomes in residents of lower socioeconomic areas of Australia.

OBJECTIVE: To investigate patient, cancer and treatment factors associated with the residence of female breast cancer patients in lower socioeconomic areas of Australia to better understand factors that may contribute to their poorer cancer outcomes. METHODS: Bivariable and multivariable analyses were performed using the Breast Quality Audit database of Breast Surgeons of Australia and New Zealand. RESULTS Multivariable regression indicated that patients from lower socioeconomic areas are more likely to live in more remote areas and to be treated at regional than major city centres. Although they appeared equally likely to be referred to surgeons from BreastScreen services as patients from higher socioeconomic areas, they were less likely to be referred as asymptomatic cases from other sources. In general, their cancer and treatment characteristics did not differ from those of women from higher socioeconomic areas, but ovarian ablation therapy was less common for these patients and bilateral synchronous lesions tended to be less frequent than for women from higher socioeconomic areas. CONCLUSIONS: The results indicate that patients from lower socioeconomic areas are more likely to live in more remote districts and have their treatment in regional rather than major treatment centres. Their cancer and treatment characteristics appear to be similar to those of women from higher socioeconomic areas, although they are less likely to have ovarian ablation or to be referred as asymptomatic patients from sources other than BreastScreen. What is known about this topic? It is already known from Australian data that breast cancer outcomes are not as favourable for women from areas of socioeconomic disadvantage. The reasons for the poorer outcomes have not been understood. Studies in other countries have also found poorer outcomes in women from lower socioeconomic areas, and in some instances, have attributed this finding to more advanced stages of cancers at diagnosis and more limited treatment. The reasons are likely to vary with the country and health system characteristics. What does this paper add? The present study found that in Australia, women from lower socioeconomic areas do not have more advanced cancers at diagnosis, nor, in general, other cancer features that would predispose them to poorer outcomes. The standout differences were that they tended more to live in areas that were more remote from specialist metropolitan centres and were more likely to be treated in regional settings where prior research has indicated poorer outcomes. The reasons for these poorer outcomes are not known but may include lower levels of surgical specialisation, less access to specialised adjunctive services, and less involvement with multidisciplinary teams. Women from lower socioeconomic areas also appeared more likely to attend lower case load surgeons. Little difference was evident in the type of clinical care received, although women from lower socioeconomic areas were less likely to be asymptomatic referrals from other clinical settings (excluding BreastScreen). What are the implications for practitioners? Results suggest that poorer outcomes in women from lower socioeconomic areas in Australia may have less to do with the characteristics of their breast cancers or treatment modalities and more to do with health system features, such as access to specialist centres. This study highlights the importance of demographic and health system features as potentially key factors in service outcomes. Health system research should be strengthened in Australia to augment biomedical and clinical research, with a view to best meeting service needs of all sectors of the population.

Survival from breast cancer: an analysis of Australian data by surgeon case load, treatment centre location, and health insurance status.

OBJECTIVE: Early invasive breast cancer data from the Australian National Breast Cancer Audit were used to compare case fatality by surgeon case load, treatment centre location and health insurance status. METHOD: Deaths were traced to 31 December 2007, for cancers diagnosed in 1998-2005. Risk of breast cancer death was compared using Cox proportional hazards regression. RESULTS: When adjustment was made for age and clinical risk factors: (i) the relative risk of breast cancer death (95% confidence limit) was lower when surgeons' annual case loads exceeded 20 cases, at 0.87 (0.76, 0.995) for 21-100 cases and 0.83 (0.72, 0.97) for higher case loads. These relative risks were not statistically significant when also adjusting for treatment centre location (P ≥ 0.15); and (ii) compared with major city centres, inner regional centres had a relative risk of 1.32 (1.18, 1.48), but the risk was not elevated for more remote sites at 0.95 (0.74, 1.22). Risk of death was not related to private insurance status. CONCLUSION: Higher breast cancer mortality in patients treated in inner regional than major city centres and in those treated by surgeons with lower case loads requires further study.

Australian women's awareness of ovarian cancer symptoms, risk and protective factors, and estimates of own risk.

OBJECTIVE: To examine Australian women's perceived risk of ovarian cancer, reasons for perceived risk levels, and knowledge of ovarian cancer symptoms at two timepoints (2003 and 2007). METHODS: A computer-assisted telephone (CATI) survey of 2,954 Australian women with no history of ovarian cancer was conducted. RESULTS: Approximately 60% of women perceived their risk of ovarian cancer was similar to other women of their age; 10% indicated an increased risk, and 30% indicated a lower risk. These figures were similar in 2003 and 2007. Logistic regression found that lower income, increased age, being born overseas, and being retired were significantly associated with lower perceived risk (accounted for only 7.5% of the variance). Common reasons for higher perceived risk included family history of ovarian/other cancers, increasing age, and having had other types of cancer or health problems. Reasons for lower than average risk included absence of family history, having a hysterectomy, and having regular Pap smears (indicating confusion between ovarian and cervical cancer). There appeared to be substantial confusion in women's understanding of ovarian cancer symptoms; this was similar in 2003 and 2007. CONCLUSION: The observed misperceptions and confusion regarding ovarian cancer symptoms and risk factors suggest ongoing public education campaigns are needed to improve knowledge and awareness.

Australian women's awareness of breast cancer symptoms and responses to potential symptoms.

OBJECTIVES: Poor awareness of breast cancer symptoms has been associated with patient delay in seeking help; thus reduced survival, more aggressive treatment, and fewer treatment choices. The aim of this study was to develop a representative picture of Australian women's knowledge of symptoms, experienced potential symptoms, and behavioral responses. METHODS: A general population sample of approximately 3,000 women aged 30-69 completed a telephone survey; results were compared to previous surveys conducted in 1996 and 2003. RESULTS: The most commonly cited potential symptom of breast cancer was a lump in the breast, identified by 86% of respondents (an increase from 75% in 2003). Other commonly mentioned symptoms were discharge from the nipple, pain/soreness, skin puckering, or dimpling; and a change in breast shape. The proportion unable to name any potential symptoms of breast cancer decreased from one in ten in 2003 to approximately one in twenty in 2007. The primary reason for not seeking medical advice in response to a potential symptom was the belief that breast cancer was not present. CONCLUSIONS: Health promotion efforts need to continue to aim at increasing community understanding of potential breast cancer symptoms and encouraging women to act on potential symptoms by seeking medical advice.

Patterns of surgical treatment for women with breast cancer in relation to age.

Although treatment recommendations have been advocated for all women with early breast cancer regardless of age, it is generally accepted that different treatments are preferred based on the age of the patient. The aim of this study was to assess the pattern of breast cancer surgery after adjusting for other major prognostic factors in relation to patient age. Data on cancer characteristics and surgical procedures in 31,298 patients with early breast cancer reported to the National Breast Cancer Audit between 1999 and 2006 were used for the study. There was a close association between age and surgical treatment pattern after adjusting for other prognostic factors, including tumor size, histologic grade, number of tumors, lymph node positivity, lymphovascular invasion (LVI), and extensive intraduct component. Breast Conserving Surgery (BCS) was highest among women aged 70 years (OR = 0.498, 95% CI: 0.455-0.545). Significantly more women aged 50 years (11.4-17.0%). Women aged >70 years were more likely to receive no surgical treatment, 3.5% versus 1.0-1.3% in all other age groups (70 years) more commonly undergo mastectomy and are more likely to receive no surgical treatment.

Optimal Cancer Care for Aboriginal and Torres Strait Islander People: A Shared Approach to System Level Change.

PURPOSE: To improve cancer outcomes for Aboriginal and Torres Strait Islander people through the development and national endorsement of the first population-specific optimal care pathway (OCP) to guide the delivery of high-quality, culturally appropriate, and evidence-based cancer care. METHODS: An iterative methodology was undertaken over a 2-year period, and more than 70 organizations and individuals from diverse cultural, geographic, and sectorial backgrounds provided input. Cancer Australia reviewed experiences of care and the evidence base and undertook national public consultation with the indigenous health sector and community, health professionals, and professional colleges. Critical to the OCP development was the leadership of Aboriginal and Torres Strait Islander health experts and consumers. RESULTS: The OCP received unanimous endorsement by all federal, state, and territory health ministers. Key elements of the OCP include attention to the cultural appropriateness of the health care environment; improvement in cross-cultural communication; relationship building with local community; optimization of health literacy; recognition of men's and women's business; and the need to use culturally appropriate resources. The OCP can be used as a tool for health services and health professionals to identify gaps in current cancer services and to inform quality improvement initiatives across all aspects of the care pathway. CONCLUSION: The development of the OCP identified a number of areas that require prioritization. Ensuring culturally safe and accessible health services is essential to support early presentation and diagnosis. Multidisciplinary treatment planning and patient-centered care are required for all Aboriginal and Torres Strait Islander people, irrespective of location. Health planners and governments acknowledge the imperative for change and have expressed strong commitment to work with indigenous Australians to improve the accessibility, cultural appropriateness, and quality of cancer care.

A national cancer control program: the 'Down Under' experience with breast cancer.

The use of national, coordinated and comprehensive strategies supported by evidence and focused on a specific cancer is one model for improving cancer control. The National Breast Cancer Centre (NBCC) was established in Australia in 1995 to coordinate breast cancer control initiatives across the country and has successfully achieved a number of world-firsts in this thirteen year period. Crucial elements of the initiative have included broad consultation with key stakeholders, evidence-based focus, addressing recognized gaps in care, multidisciplinary input including consumer involvement, innovative approaches, and independent operation notwithstanding government funding. The NBCC's experience has been extended to ovarian cancer control and may be useful for others intending to establish national programs in cancer control.

Reasons for improved survival from ovarian cancer in New South Wales, Australia, between 1980 and 2003: implications for cancer control.

We analyzed New South Wales Central Cancer Registry data for 1980-2003, to determine time trends in case fatality from ovarian cancer, after adjusting for stage, histological, and sociodemographic factors, and to consider service-delivery and research implications. After adjusting for covariates, the relative risk (95% confidence limit) of ovarian-cancer death reduced to 0.51 (0.46, 0.57) for 1999-2003 compared with 1980-1983. Relative risks were higher for adenocarcinomas and other specified and unspecified cancers than serous carcinomas, but lower for endometrioid carcinomas, sex cord-stromal and germ cell tumors. The probability of diagnosis with localized as opposed to more advanced disease was lower in older patients, the lowest socioeconomic stratum, women born in non-English-speaking countries, and more recent diagnostic periods. Approximately 61% of ovarian cancers had distant metastases at diagnosis in 1999-2003. Poorer survivals apply to older patients. Research directed at finding an effective screening test for epithelial ovarian cancer remains a priority.

Population screening and early detection of ovarian cancer in asymptomatic women.

The National Breast and Ovarian Cancer Centre position statement: 'Population screening and early detection of ovarian cancer in asymptomatic women', was developed and agreed following a Forum in February 2009 attended by key Australian stakeholders. The final position statement and supporting background information have been endorsed by key Australian colleges and agencies. Position statement on population screening and early detection of ovarian cancer in asymptomatic women: 1) There is currently no evidence that any test, including pelvic examination, CA125 or other biomarkers, ultrasound (including transvaginal ultrasound), or combination of tests, results in reduced mortality from ovarian cancer. 2) There is no evidence to support the use of any test, including pelvic examination, CA125 or other biomarkers, ultrasound (including transvaginal ultrasound), or combination of tests, for routine population-based screening for ovarian cancer. 3) Further validation in large clinical trials is required before current or new biomarkers could be recommended for routine use in a population screening setting.

The 2003 Australian Breast Health Survey: survey design and preliminary results.

BACKGROUND: The Breast Health Surveys, conducted by the National Breast Cancer Centre (NBCC) in 1996 and 2003, are designed to gain insight into the knowledge, attitudes and behaviours of a nationally representative sample of Australian women on issues relevant to breast cancer. In this article, we focus on major aspects of the design and present results on respondents' knowledge about mammographic screening. METHODS: The 2003 BHS surveyed English-speaking Australian women aged 30-69 without a history of breast cancer using computer-assisted telephone interviewing. Questions covered the following themes: knowledge and perceptions about incidence, mortality and risk; knowledge and behaviour regarding early detection, symptoms and diagnosis; mammographic screening; treatment; and accessibility and availability of information and services. Respondents were selected using a complex sample design involving stratification. Sample weights against Australian population benchmarks were used in all statistical analyses. Means and proportions for the entire population and by age group and area of residence were calculated. Statistical tests were conducted using a level of significance of 0.01. RESULTS: Of the 3,144 respondents who consented to being interviewed, 138 (4.4%) had a previous diagnosis of breast cancer and were excluded leaving 3,006 completed interviews eligible for analysis. A majority of respondents (61.1%) reported ever having had a mammogram and 29.1% identified mammography as being the best way of finding breast cancer. A majority of women (85.9%) had heard of the BreastScreen Australia (BSA) program, the national mammographic screening program providing free biennial screening mammograms, with 94.5% believing that BSA attendance was available regardless of the presence or absence of symptoms. There have been substantial gains in women's knowledge about mammographic screening over the seven years between the two surveys. CONCLUSION: The NBCC Breast Health Surveys provide a valuable picture of the knowledge of Australian women about a range of issues. The present analysis shows significant gains in knowledge and behaviours relating to mammographic screening, while identifying additional areas for targeted improvement, as in the need to better communicate with women about screening and diagnostic services. Further analysis of additional core topic areas (eg., incidence, mortality, risk and treatment) will provide equally noteworthy insight.

Development of a National Aboriginal and Torres Strait Islander Cancer Framework: A Shared Process to Guide Effective Policy and Practice.

Indigenous Australians experience a substantially higher cancer mortality rate than non-Indigenous Australians. While cancer outcomes are improving for non-Indigenous Australians, they are worsening for Indigenous Australians. Reducing this disparity requires evidence-based and culturally-appropriate guidance. The purpose of this paper is to describe an initiative by Cancer Australia and Menzies School of Health Research (Menzies) to develop Australia’s first National Aboriginal and Torres Strait Islander Cancer Framework using a process of co-design with relevant stakeholders. The initiative was guided by three core principles: achieving policy-relevant evidence-based outcomes; engaging and maintaining trust with Indigenous Australians at every phase; and employing best-practice and appropriate research methods. Four components of research comprised the Framework development: evidence review; multifaceted stakeholder consultation and input; triangulation of findings; and direct stakeholder input in drafting and refining the Framework. The evidence review confirmed the increasing burden of cancer on Indigenous Australians, while stakeholder consultations facilitated comprehensive input from those with lived experience. The consultations revealed issues not identified in existing literature, and gave different emphases of priority, thus reinforcing the value of including stakeholder perspectives. This paper focuses primarily on documenting the methods used; findings are presented only in order to illustrate the results of the process. The published Framework is available at www.canceraustralia.gov.au; further description and analyses of findings from the consultations will be published elsewhere. The logistics inherent in large-scale consultation are considerable. However, the quality of data and the foundation for sustained partnership with stakeholders and knowledge translation vastly outweighed the challenges. The process of wide-ranging stakeholder consultation described in this paper offers a model for other areas of national and international Indigenous priority setting and policy and practice development that meets the needs of those most affected. The Framework, through the establishment of an agreed, shared and evidence-based agenda, provides guidance for jurisdictional cancer plans, optimal care pathways, and program and service planning for the multiple players across all levels of the health system.

Variations in outcomes by residential location for women with breast cancer: a systematic review.

OBJECTIVES: To systematically assess the evidence for variations in outcomes at each step along the breast cancer continuum of care for Australian women by residential location. DESIGN: Systematic review. METHODS: Systematic searches of peer-reviewed articles in English published from 1 January 1990 to 24 November 2017 using PubMed, EMBASE, CINAHL and Informit databases. Inclusion criteria were: population was adult female patients with breast cancer; Australian setting; outcome measure was survival, patient or tumour characteristics, screening rates or frequencies, clinical management, patterns of initial care or post-treatment follow-up with analysis by residential location or studies involving non-metropolitan women only. Included studies were critically appraised using a modified Newcastle-Ottawa Scale. RESULTS: Seventy-four quantitative studies met the inclusion criteria. Around 59% were considered high quality, 34% moderate and 7% low. No eligible studies examining treatment choices or post-treatment follow-up were identified. Non-metropolitan women consistently had poorer survival, with most of this differential being attributed to more advanced disease at diagnosis, treatment-related factors and socioeconomic disadvantage. Compared with metropolitan women, non-metropolitan women were more likely to live in disadvantaged areas and had differing clinical management and patterns of care. However, findings regarding geographical variations in tumour characteristics or diagnostic outcomes were inconsistent. CONCLUSIONS: A general pattern of poorer survival and variations in clinical management for Australian female patients with breast cancer from non-metropolitan areas was evident. However, the wide variability in data sources, measures, study quality, time periods and geographical classification made direct comparisons across studies challenging. The review highlighted the need to promote standardisation of geographical classifications and increased comparability of data systems. It also identified key gaps in the existing literature including a lack of studies on advanced breast cancer, geographical variations in treatment choices from the perspective of patients and post-treatment follow-up.

National Breast Cancer Audit: ductal carcinoma in situ management in Australia and New Zealand.

BACKGROUND: Ductal carcinoma in situ (DCIS) is a significant issue in Australia and New Zealand with rising incidence because of the implementation of mammographic screening. Current information on its natural history is unable to accurately predict progression to invasive cancer. In 2003, the National Breast Cancer Centre in Australia published recommendations for DCIS. In Australia and New Zealand, the National Breast Cancer Audit collects information on DCIS cases. This article will examine these recommendations and provide information from the audit on current DCIS management. METHODS: Three thousand six hundred and twenty-nine cases of DCIS were entered by 274 breast surgeons between January 1998 and December 2004. Data items in the National Breast Cancer Audit database that were covered in the National Breast Cancer Centre recommendations were reviewed. Information was available on the following: diagnostic biopsy rates for all cases and mammographically positive cases and rates of breast conserving surgery (BCS), clear margins following BCS, postoperative radiotherapy following BCS for groups at high risk of recurrence as well as axillary procedures and tamoxifen prescription. RESULTS: Close adherence was found in diagnostic biopsy, BCS and clear margin rates. Some high-risk groups received radiotherapy, although women with 'close' margins did not in 33% of cases. Axillary procedures were conducted in 23% of cases and most (81%) patients were not prescribed tamoxifen. CONCLUSION: There was predominantly close adherence to recommendations with three possible areas of improvement: fewer axillary procedures, an appraisal of radiotherapy practice following BCS and more investigation into tamoxifen prescription practices for DCIS.

National breast cancer audit: overview of invasive breast cancer management.

BACKGROUND: The National Breast Cancer Audit is an initiative of the Breast Section of the Royal Australasian College of Surgeons collecting surgical information in early breast cancer. It is managed in conjunction with the Australian Safety and Efficacy Register of New Interventional Procedures - Surgical. An overview of results for invasive breast cancer from January 1999 until December 2004 is presented to provide preliminary data for participating surgeons. METHODS: Invasive breast cancer cases were retrieved from the National Breast Cancer Audit database for the 274 participating breast surgeons in Australia and New Zealand. Data for a variety of clinical parameters were analysed to provide an overview of the diagnostic, histological, surgical and adjuvant therapy management issues. RESULTS: There were 25,026 cases of invasive breast cancer. Annual percentages of mammographically detected cancers from 1999 to 2004 did not differ significantly. Breast-conserving surgery rates also remained stable at 60%. Margins were involved in 5% of patients; an additional 9% had final margins of less than 1 mm. Radiotherapy followed breast-conserving surgery in most cases (86%). Patients undergoing mastectomy with large tumours (>5 cm) underwent radiotherapy in 71% of cases. When at least four lymph nodes were positive, radiotherapy followed mastectomy in the majority (75%) of cases. The most frequently carried out axillary procedure was a level 2 dissection. Chemotherapy was received by 78% of oestrogen receptor negative, axillary node positive, postmenopausal patients. Tamoxifen was used in the majority (83%) of oestrogen receptor positive cases. CONCLUSION: Surgeons contributing their invasive breast cancer data show a high quality of treatment. Some further improvement may be possibly related to excision margins and tamoxifen prescription for oestrogen receptor negative cancers. Chemotherapy prescription might also warrant further investigation.

Breast cancer survival in New Zealand women.

BACKGROUND: The Quality Audit (BQA) of Breast Surgeons of Australia and New Zealand includes a broad range of data and is the largest New Zealand (NZ) breast cancer (BC) database outside the NZ Cancer Registry. We used BQA data to compare BC survival by ethnicity, deprivation, remoteness, clinical characteristic and case load. METHODS: BQA and death data were linked using the National Health Index. Disease-specific survival for invasive cases was benchmarked against Australian BQA data and NZ population-based survivals. Validity was explored by comparison with expected survival by risk factor. RESULTS: Compared with 93% for Australian audit cases, 5-year survival was 90% for NZ audit cases overall, 87% for Maori, 84% for Pacific and 91% for other. CONCLUSIONS: BC survival in NZ appears lower than in Australia, with inequities by ethnicity. Differences may be due to access, timeliness and quality of health services, patient risk profiles, BQA coverage and death-record methodology.

Factors predictive of treatment by Australian breast surgeons of invasive female breast cancer by mastectomy rather than breast conserving surgery.

BACKGROUND: The National Breast Cancer Audit Database of the Society of Breast Surgeons of Australia and New Zealand is used by surgeons to monitor treatment quality and for research. About 60% of early invasive female breast cancers in Australia are recorded. The objectives of this study are: (1) to investigate associations of socio-demographic, health-system and clinical characteristics with treatment of invasive female breast cancer by mastectomy compared with breast conserving surgery; and (2) to consider service delivery implications. MATERIALS AND METHODS: Bi-variable and multivariable analyses of associations of characteristics with surgery type for cancers diagnosed in 1998-2010. RESULTS: Of 30,299 invasive cases analysed, 11,729 (39%) were treated by mastectomy as opposed to breast conserving surgery. This proportion did not vary by diagnostic year (p>0.200). With major city residence as the reference category, the relative rate (95% confidence limits) of mastectomy was 1.03 (0.99, 1.07) for women from inner regional areas and 1.05 (1.01, 1.10) for those from more remote areas. Low annual surgeon case load (<10) was predictive of mastectomy, with a relative rate of 1.08 (1.03, 1.14) when compared with higher case loads. Tumour size was also predictive, with a relative rate of 1.05 (1.01, 1.10) for large cancers (40+ mm) compared with smaller cancers (<30 mm). These associations were confirmed in multiple logistic regression analysis. CONCLUSIONS: Results confirm previous studies showing higher mastectomy rates for residents of more remote areas, those treated by surgeons with low case loads, and those with large cancers. Reasons require further study, including possible effects of surgeon and woman's choice and access to radiotherapy services.

Risk factors for poorer breast cancer outcomes in residents of remote areas of Australia.

To investigate patient, cancer and treatment characteristics in females with breast cancer from more remote areas of Australia, to better understand reasons for their poorer outcomes, bi-variable and multivariable analyses were undertaken using the National Breast Cancer Audit database of the Society of Breast Surgeons of Australia and New Zealand. Results indicated that patients from more remote areas were more likely to be of lower socio- economic status and be treated in earlier diagnostic epochs and at inner regional and remote rather than major city centres. They were also more likely to be treated by low case load surgeons, although this finding was only of marginal statistical significance in multivariable analysis (p=0.074). Patients from more remote areas were less likely than those from major cities to be treated by breast conserving surgery, as opposed to mastectomy, and less likely to have adjuvant radiotherapy when having breast conserving surgery. They had a higher rate of adjuvant chemotherapy. Further monitoring will be important to determine whether breast conserving surgery and adjuvant radiotherapy utilization increase in rural patients following the introduction of regional cancer centres recently funded to improve service access in these areas.