A multilevel investigation of inequalities in clinical and psychosocial outcomes for women after breast cancer

Background In Australia, breast cancer is the most common cancer affecting Australian women. Inequalities in clinical and psychosocial outcomes have existed for some time, affecting particularly women from rural areas and from areas of disadvantage. We have a limited understanding of how individual and area-level factors are related to each other, and their associations with survival and other clinical and psychosocial outcomes. Methods/Design This study will examine associations between breast cancer recurrence, survival and psychosocial outcomes (e.g. distress, unmet supportive care needs, quality of life). The study will use an innovative multilevel approach using area-level factors simultaneously with detailed individual-level factors to assess the relative importance of remoteness, socioeconomic and demographic factors, diagnostic and treatment pathways and processes, and supportive care utilization to clinical and psychosocial outcomes. The study will use telephone and self-administered questionnaires to collect individual-level data from approximately 3, 300 women ascertained from the Queensland Cancer Registry diagnosed with invasive breast cancer residing in 478 Statistical Local Areas Queensland in 2011 and 2012. Area-level data will be sourced from the Australian Bureau of Statistics census data. Geo-coding and spatial technology will be used to calculate road travel distances from patients' residence to diagnostic and treatment centres. Data analysis will include a combination of standard empirical procedures and multilevel modelling. Discussion The study will address the critical question of: what are the individual- or area-level factors associated with inequalities in outcomes from breast cancer? The findings will provide health care providers and policy makers with targeted information to improve the management of women with breast cancer, and inform the development of strategies to improve psychosocial care for women with breast cancer.

The obesity-associated polymorphisms FTO rs9939609 and MC4R rs17782313 and endometrial cancer risk in non-Hispanic white women

Overweight and obesity are strongly associated with endometrial cancer. Several independent genome-wide association studies recently identified two common polymorphisms, FTO rs9939609 and MC4R rs17782313, that are linked to increased body weight and obesity. We examined the association of FTO rs9939609 and MC4R rs17782313 with endometrial cancer risk in a pooled analysis of nine case-control studies within the Epidemiology of Endometrial Cancer Consortium (E2C2). This analysis included 3601 non-Hispanic white women with histologically-confirmed endometrial carcinoma and 5275 frequency-matched controls. Unconditional logistic regression models were used to assess the relation of FTO rs9939609 and MC4R rs17782313 genotypes to the risk of endometrial cancer. Among control women, both the FTO rs9939609 A and MC4R rs17782313 C alleles were associated with a 16% increased risk of being overweight (p = 0.001 and p = 0.004, respectively). In case-control analyses, carriers of the FTO rs9939609 AA genotype were at increased risk of endometrial carcinoma compared to women with the TT genotype [odds ratio (OR) = 1.17; 95% confidence interval (CI): 1.03–1.32, p = 0.01]. However, this association was no longer apparent after adjusting for body mass index (BMI), suggesting mediation of the gene-disease effect through body weight. The MC4R rs17782313 polymorphism was not related to endometrial cancer risk (per allele OR = 0.98; 95% CI: 0.91–1.06; p = 0.68). FTO rs9939609 is a susceptibility marker for white non-Hispanic women at higher risk of endometrial cancer. Although FTO rs9939609 alone might have limited clinical or public health significance for identifying women at high risk for endometrial cancer beyond that of excess body weight, further investigation of obesity-related genetic markers might help to identify the pathways that influence endometrial carcinogenesis.

Improving Indigenous women’s wellness through action research

Today in Australia, 75% of all Indigenous Australians reside in urban and peri-urban areas. In Brisbane, Indigenous Australians now number just over 45,000, and this number is rapidly increasing. Undertaking research with urban based Indigenous Australians is a relatively new phenomenon. Most past research with Indigenous people has been carried out in remote and regional areas. This paper focuses on a Participation Action Research project undertaken with Indigenous women in the highly urbanised area of North Brisbane. The project takes on the challenge of undertaking urban based Indigenous research. It opts not to centre on poor Indigenous women’s health statistics but instead centres on Indigenous women’s wellness and ways to talk about and work towards wellness. Through the cycles of dialogue with Indigenous women these concepts were teased out and manifested in two highly successful Women’s Wellness Summits. This paper will outline aspects of this project.

An ingenious decision support system for remote health monitoring of pregnant women

Maternal deaths have been a critical issue for women living in rural and remote areas. The need to travel long distances, the shortage of primary care providers such as physicians, specialists and nurses, and the closing of small hospitals have been problems identified in many rural areas. Some research work has been undertaken and a few techniques have been developed to remotely measure the physiological condition of pregnant women through sophisticated ultrasound equipment. There are numerous ways to reduce maternal deaths, and an important step is to select the right approaches to achieving this reduction. One such approach is the provision of decision support systems in rural and remote areas. Decision support systems (DSSs) have already shown a great potential in many health fields. This thesis proposes an ingenious decision support system (iDSS) based on the methodology of survey instruments and identification of significant variables to be used in iDSS using statistical analysis. A survey was undertaken with pregnant women and factorial experimental design was chosen to acquire sample size. Variables with good reliability in any one of the statistical techniques such as Chi-square, Cronbach’s á and Classification Tree were incorporated in the iDSS. The decision support system was developed with significant variables such as: Place of residence, Seeing the same doctor, Education, Tetanus injection, Baby weight, Previous baby born, Place of birth, Assisted delivery, Pregnancy parity, Doctor visits and Occupation. The ingenious decision support system was implemented with Visual Basic as front end and Microsoft SQL server management as backend. Outcomes of the ingenious decision support system include advice on Symptoms, Diet and Exercise to pregnant women. On conditional system was sent and validated by the gynaecologist. Another outcome of ingenious decision support system was to provide better pregnancy health awareness and reduce long distance travel, especially for women in rural areas. The proposed system has qualities such as usefulness, accuracy and accessibility.

Enhancing and promoting Indigenous women's wellness

The term "Social and Emotional Wellbeing" (SEWB) was coined through the noted inability of conventional psychiatric terminology when addressing Indigenous holistic connections and opposes the Anglo-Saxon terminology that often boxes "mental health" as a diagnosis, disease or illness into separate origins from that of other personal holistic existence, which in turn directly objects to Indigenous thinking and perceptions of wellbeing. Purpose: This study's aim was to explore what Indigenous Women's Social and Emotional Wellbeing is, through Indigenous perceptions, beliefs and knowledge of Indigenous women's wellbeing experiences. Methods: Data was derived from semi-structured focus groups incorporating Indigenous specific Yarning, where Aboriginal and Torres Strait Islander women who have experienced or were at risk of developing social and emotional wellness problems came together. Results: The women identified many factors underpinning social and emotional wellness and what it means for Aboriginal and Torres Strait Islander women. The major themes centred around wellness and health, autonomy, Indigenous women being heard, historical factors, support and Indigenous women's group development and continuation. Conclusion: These issues where then explored and compared to the National Aboriginal and Torres Strait Islander Women's Health Strategy Action Areas.

ACE research briefing paper 005: Global Entrepreneurship Monitor (GEM) - Australia 2011 National Report

This report maps the current state of entrepreneurship in Australia using data from the Global Entrepreneurship Monitor (GEM) for the year 2011. Entrepreneurship is regarded as a crucial driver for economic well-being. Entrepreneurial activity in new and established firms drives innovation and creates jobs. Entrepreneurs also fuel competition thereby contributing indirectly to market and productivity growth along with improving competitiveness of the national economy. Given the economic landscape that exists as a result of the global financial crisis (GFC), it is probably more important than ever for us to understand the effects and drivers of entrepreneurial activity and attitudes in Australia. The central finding of this report is that entrepreneurship is certainly alive and well in Australia. With 10.5 per cent of the adult population involved in setting up a new business or owning a newly founded business as measured by the total entrepreneurial activity rate (TEA) in 2011, Australia ranks second only to the United States among the innovation-driven (developed) economies. Compared with 2010 the TEA rate has increased by 2.7 percentage points. Furthermore, in regard to employee entrepreneurial activity (EEA) rate in established firms, Australia ranks above average. According to GEM data, 5 per cent of the adult population is engaged in developing or launching new products, a new business unit or subsidiary for their employer. Further analysis of the GEM data also clearly shows that Australia compares well with other major economies in terms of the ‘quality’ of entrepreneurial activities being pursued. Indeed, it is not only the quantity of entrepreneurs but also the level of their aspirations and business goals that are important drivers for economic growth. On average, for each business started in Australia driven by the lack of alternatives for the founder to generate income from any other source, there are five other businesses started where the founders specifically want to take advantage of a business opportunity that they believe will increase their personal income or independence. With respect to innovativeness, 31 per cent of Australian new businesses offer products or services which they consider to be new to customers or where very few, or in some cases no, other businesses offer the same product or service. Both these indicators are higher than the average for innovation-driven economies. Somewhat below average is the international orientation of Australian entrepreneurs whereby only 12 per cent aim at having a substantial share of customers from international markets. So what drives this high quantity and quality of entrepreneurship in Australia? The analysis of the data suggests it is a combination of both business opportunities and entrepreneurial skills. It seems that around 50 per cent of the Australian population identify opportunities for a start-up venture and believe that they have the necessary skills to start a business. Furthermore, a large majority of the Australian population report that high media attention for entrepreneurship provides successful role models for prospective entrepreneurs. As a result, 12 per cent of our respondents have expressed the intention to start a business within the next three years. These numbers are all well above average when compared to the other major economies. With regard to gender, the GEM survey shows a high proportion of female entrepreneurs. Approximately 8.4 per cent of adult females are actually involved in setting up a business or have recently done so. Although this female TEA rate is slightly down from 2010, Australia ranks second among the innovation-driven economies. This paints a healthy picture of access to entrepreneurial opportunities for Australian women.

Things that fall over : Women's playwriting, poetics and the (anti-)musical

Abstract: This study explores the contradictions and ambivalences experienced by a working artist at a time when her age, her gender, and broader cultural shifts are all potential obstacles or liabilities to creative flourishing. It is the product of practice-led research into the creative process from the perspective of the female "late bloomer". In this phrase, I have in mind the mature-aged woman who is, in mid-life, suddenly seized with inspiration and fired with creative energy. At its heart is the question: If an Elizabeth Jolley were in our midst today, would we hear from her? The result is a full-length libretto and accompanying exegetical binoculars in the form of a Preface and an Afterword. The creative work, Things That Fall Over (TTFO) is conceived in two parts: a libretto and oratorio for performance. It begins as a play, but over three acts and into a coda, the work becomes something entirely other - an (anti-) musical. The work grew from a personal interest in the nexus between women, ageing and creative practice, via investigation into the oeuvre of two Australian artists, Elizabeth Jolley, author, first published at age 53, and Rosalie Gascoigne, sculptor, first exhibited at 58. A second strand of the research grew from a fascination for the stage musical, especially in its more alternative modes as in the hands of Stephen Sondheim, or in more provocative manifestations as witnessed in recent Tony Award winners Avenue Q and The Book of Mormon. Contextually, this research is conducted at a time when anecdotal evidence suggests that women’s work in the performing arts and in literature is being pushed to the margins after a late twentieth century Golden Age on page and stage. Using hybrid practice-led methodologies - bricolage, log-keeping - and working within queer and feminist paradigms, this study seeks to counter that push with a new work that is all-female, part-pantomime, part monstrous allegory. In illuminating the creative process of a mature-aged playwright it concludes that hybrid and interstitial forms still offer an inclusive and democratic space in which voices that may otherwise be muted will continue to be heard.

Lifestyle risk factor modification in midlife women with type 2 diabetes : theoretical modelling of perceived barriers

Objective: The aim of this paper is to propose a ‘Perceived barriers and lifestyle risk factor modification model’ that could be incorporated into existing frameworks for diabetes education to enhance lifestyle risk factor education in women. Setting: Diabetes education, community health. Primary argument: ‘Perceived barriers’ is a health promotion concept that has been found to be a significant predictor of health promotion behaviour. There is evidence that women face a range of perceived barriers that prevent them from engaging in healthy lifestyle activities. Despite this, current evidence based models of diabetes education do not explicitly incorporate the concept of perceived barriers. A model of risk factor reduction that incorporates ‘perceived barriers’ is proposed. Conclusion: Although further research is required, current approaches to risk factor reduction in type 2 diabetes could be enhanced by identification and goal setting to reduce an individual’s perceived barriers.

Pregnancy losses in young Australian women : findings from the Australian Longitudinal Study on Women's Health

INTRODUCTION: Little research has examined recognized pregnancy losses in a general population. Data from an Australian cohort study provide an opportunity to quantify this aspect of fecundity at a population level. METHOD: Participants in the Australian Longitudinal Study on Women's Health who were aged 28-33 years in 2006 (n = 9,145) completed up to 4 mailed surveys over 10 years. Participants were categorized according to the recognized outcome of their pregnancies, including live birth, miscarriage/stillbirth, termination/ectopic, or no pregnancy. RESULTS: At age 18-23, more women reported terminations (7%) than miscarriages (4%). By 28-33 years, the cumulative frequency of miscarriage (15%) was as common as termination (16%). For women aged 28-33 years who had ever been pregnant (n = 5,343), pregnancy outcomes were as follows: birth only (50%); loss only (18%); and birth and loss (32%), of which half (16%) were birth and miscarriage. A comparison between first miscarriage and first birth (no miscarriage) showed that most first miscarriages occurred in women aged 18-23 years who also reported a first birth at the same survey (15%). Half (51%) of all first births and first miscarriages in women aged 18-19 ended in miscarriage. Early childbearers (<28 years) often had miscarriages around the same time period as their first live birth, suggesting proactive family formation. Delayed childbearers (32-33 years) had more first births than first miscarriages. CONCLUSION: Recognized pregnancy losses are an important measure of fecundity in the general population because they indicate successful conception and maintenance of pregnancy to varying reproductive endpoints.

Challenges for researchers investigating contraceptive use and pregnancy intentions of young women living in urban and rural Australia : face-to-face discussions to increase participation in a web-based survey

Background: It is imperative to understand how to engage young women in research about issues that are important to them. There is limited reliable data on how young women access contraception in Australia especially in rural areas where services may be less available. Objective: This paper identifies the challenges involved in engaging young Australian women aged 18-23 years to participate in a web-based survey on contraception and pregnancy and ensure their ongoing commitment to follow-up web-based surveys. Methods: A group of young women, aged 18-23 years and living in urban and rural New South Wales, Australia, were recruited to participate in face-to-face discussions using several methods of recruitment: direct contact (face-to-face, telephone or email)and snowball sampling by potential participants inviting their friends. All discussions were transcribed verbatim and analyzed using thematic analysis. Results: Twenty young women participated (urban, n=10: mean age 21.6 years; rural, n=10: 20.0 years) and all used computers or smart phones to access the internet on a daily basis. All participants were concerned about the cost of internet access and utilized free access to social media on their mobile phones. Their willingness to participate in a web-based survey was dependent on incentives with a preference for small financial rewards. Most participants were concerned about their personal details and survey responses remaining confidential and secure. The most appropriate survey would take up to 15 minutes to complete, be a mix of short and long questions and eye-catching with bright colours. Questions on the sensitive topics of sexual activity, contraception and pregnancy were acceptable if they could respond with “I prefer not to answer”. Conclusions: There are demographic, participation and survey design challenges in engaging young women in a web-based survey. Based on our findings, future research efforts are needed to understand the full extent of the role social media and incentives play in the decision of young women to participate in web-based research.

Agreement between self-reported use of in vitro fertilization or ovulation induction, and medical insurance claims in Australian women aged 28–36 years

STUDY QUESTION: What is the self-reported use of in vitro fertilization (IVF) and ovulation induction (OI) in comparison with insurance claims by Australian women aged 28–36 years? SUMMARY ANSWER: The self-reported use of IVF is quite likely to be valid; however, the use of OI is less well reported. WHAT IS KNOWN AND WHAT THIS PAPER ADDS: Population-based research often relies on the self-reported use of IVF and OI because access to medical records can be difficult and the data need to include sufficient personal identifying information for linkage to other data sources. There have been few attempts to explore the reliability of the self-reported use of IVF and OI using the linkage to medical insurance claims for either treatment. STUDY DESIGN: This prospective, population-based, longitudinal study included the cohort of women born during 1973–1978 and participating in the Australian Longitudinal Study on Women's Health (ALSWH) (n = 14247). From 1996 to 2009, participants were surveyed up to five times. PARTICIPANTS AND SETTING: Participants self-reported their use of IVF or OI in two mailed surveys when aged 28–33 and 31–36 years (n = 7280), respectively. This study links self-report survey responses and claims for treatment or medication from the universal national health insurance scheme (i.e. Medicare Australia). MAIN RESULTS AND THE ROLE OF CHANCE: Comparisons between self-reports and claims data were undertaken for all women consenting to the linkage (n = 3375). The self-reported use of IVF was compared with claims for OI for IVF (Kappa, K = 0.83), oocyte collection (K = 0.82), sperm preparation (K = 0.83), intracytoplasmic sperm injection (K = 0.40), fresh embryo transfers (K = 0.82), frozen embryo transfers (K = 0.64) and OI for IVF medication (K = 0.17). The self-reported use of OI was compared with ovulation monitoring (K = 0.52) and OI medication (K = 0.71). BIAS, CONFOUNDING AND OTHER REASONS FOR CAUTION: There is a possibility of selection bias due to the inclusion criteria for participants in this study: (1) completion of the last two surveys in a series of five and (2) consent to the linkage of their responses with Medicare data. GENERALIZABILITY TO OTHER POPULATIONS: The results are relevant to questionnaire-based research studies with infertile women in developed countries. STUDY FUNDING/COMPETING INTEREST(S): ALSWH is funded by the Australian Government Department of Health and Ageing. This research is funded by a National Health and Medical Research Council Centre of Research Excellence grant.

A prospective study of pregnancy weight gain in Australian women

Background: While weight gain during pregnancy is regarded as important, there has not been a prospective study of measured weight gain in pregnancy in Australia. This study aimed to prospectively evaluate pregnancy-related weight gain against the Institute of Medicine (IOM) recommendations in women receiving antenatal care in a setting where ongoing weight monitoring is not part of routine clinical practice, to describe women's knowledge of weight gain recommendations and to describe the health professional advice received relating to gestational weight gain (GWG). Methods: Pregnant women were recruited ≤20 weeks of gestation (n = 664) from a tertiary obstetric hospital between August 2010 to July 2011 for this prospective observational study. Outcome measures were weight gain from pre-pregnancy to 36 weeks of gestation, weight gain knowledge and health professional advice received. Results: Thirty-six percent of women gained weight according to guidelines. Twenty-six percent gained inadequate weight, and 38% gained excess weight. Fifty-six percent of overweight women gained weight in excess of the IOM guidelines compared with 30% of those who started with a healthy weight (P < 0.001). At 16 weeks, 47% of participants were unsure of the weight gain recommendations for them. Sixty-two percent of women reported that the health professionals caring for them during this pregnancy ‘never’ or ‘rarely’ offered advice about how much weight to gain. Conclusions: The prevalence of inappropriate gestational weight gain in this study was high. The majority of women do not know their recommended weight gain. The advice women received from health professionals relating to healthy weight gain in pregnancy could be improved.

Increasing physical activity among women with young children: Results from the Proactive Mums Project

Context Evidence from the Australian Longitudinal Study of Women's Health suggests that mothers of young children have lower levels of physical activity (PA) than women of similar age without children. Objectives The aim of the ProActive Mums project was to determine the relative efficacy of two strategies designed to increase the proportion of mothers of young children who are meeting current PA guidelines, utilising child care centres (CCCs) as the setting for recruitment. Study Design The project used a randomised (after stratification to ensure even representation of CCCs from differing socio-economic areas) design incorporating repeated data collection from women in three groups, each consisting of 7 childcare centres (CCCs). Baseline surveys were completed by 554 mothers, with follow-up data collection immediately post-Intervention (8 weeks after baseline) and again 5 months later. Women from CCCs in Group 1 (control) received only the surveys throughout the duration of the project. Women from CCCs in Group 2 (information only) were given a print intervention, and women from CCCs in Group 3 were (in addition to being given the same print intervention as women from CCCs in Group 2) invited to to contribute to the development of, and participate in, strategies for the promotion of PA among mothers of young children. The two intervention strategies were extensively evaluated through a series of surveys and interviews. The Intervention The print intervention prescribed for women from CCCs in Group 2 and Group 3 consisted of an 8-page booklet containing motivational messages and information about physical activity. Women from CCCs in Group 3 were also invited to attend meetings at their CCC to identify strategies for increasing their PA. Contacts were made with key stakeholders in the community, including managers of sporting and recreation facilities, childcare service providers, and local councils. A wide range of strategies was developed during the intervention phase of the project, which specifically focused on the need to increase partner support and self-efficacy (or the confidence to be physically active). Results The mean age of participants was 33 (+ 4.8) years, and the mean number of children per family unit was 2.2 (± 0.9). At baseline, fewer than half the women were meeting current guidelines for adequate PA for health benefit, and there were no significant differences between groups in the proportion of women who were adequately active for health benefit. Women in Group 3 were significantly more likely to meet the guidelines at post-intervention follow-up than controls [OR = 1.71 (1.05-2.77)] after controlling for age and PA at baseline. There was no significant effect of the print intervention alone on meeting guidelines at post-intervention follow-up compared with controls, after controlling for age and PA at baseline [OR = 1.15 (0.70-1.89)]. Changes in Partner Support (PS) and Self Efficacy (SE) significantly predicted meeting current PA guidelines at post-intervention follow-up after controlling for baseline PA [∆ PS: OR = 2.29 (1.46-3.58); ∆ SE: OR = 1.86 (1.17- 2.94)]. The intervention effect in Group 3 was not maintained at long-term follow-up. Conclusions The findings indicate that a community participation approach that facilitates increased partner support and self-efficacy can be effective in increasing PA among mothers of young children. Changes in physical activity were found to be mediated by changes in partner support and self-efficacy for physical activity, suggesting that the intervention successfully targeted the individual characteristics it intended to, and that these variables do play an important role in increasing physical activity among women with young children. It is clear that further work needs to be done to explore methods of translating the short-term intervention effect shown in this study into long-term changes in PA behaviour. This study also provided insight into measurement issues in PA research and raised questions about self-report measures of PA and perceived constraints to being physically active. The results from post-study qualitative interviews suggest that many women at this life-stage experience time constraints which, when accompanied by a lack of partner support and financial constraints, make leisure-time PA virtually impossible for many women. Future strategies might focus on targeting this population immediately prior to this life-stage in an attempt to encourage habitual physical activity before women have children. Increasing PA in this population should also address the entire family unit, and consider the way leisure-time is negotiated among the adults within a household. Social change and increased awareness of the range of benefits of PA for women with children are additional strategies to be considered.