Validation of a tool for determining the clinical utility of stillbirth investigations.

BACKGROUND: Up to 20% of all stillbirths and 45% of term stillbirths are currently classified as unexplained. Many of these stillbirths do not undergo currently recommended investigations. This may leave questions unanswered and not identify stillbirths with a recurrence risk in subsequent pregnancies. AIMS: To validate a new tool (Stillbirth Investigation Utility Tool) to identify the clinical utility of investigations in stillbirth and the inter-rater agreement on cause of stillbirth using the Perinatal Society of Australia and New Zealand-Perinatal Death Classification (PSANZ-PDC). MATERIALS AND METHODS: Thirty-four stillbirths were randomly selected for inclusion, each assessed independently by five blinded assessors. The investigations were grouped into three categories: clinical and laboratory; placental pathology; and autopsy examination. The cause of death was assigned at the end of each group. Outcome measures were clinical utility of investigations measured by assessor rated usefulness and inter-rater agreement on the assigned cause of death. RESULTS: Comprehensive maternal history, maternal full blood count, maternal blood group and screen and placenta histopathology were useful in all cases. Clinical photographs were not performed and should have been performed in 50% of cases. The inter-rater agreement on cause of death assigned after all investigation results was 0.93 (95% CI 0.87-1.0). CONCLUSIONS: The new Stillbirth Investigation Utility Tool showed very good agreement in assigning the cause of death using PSANZ-PDC. Four investigations were useful in all cases. Minor refinements will be made based on feedback to enhance usability for wider implementation in research studies to assess the yield of investigations in stillbirths.

Is care of stillborn babies and their parents respectful? Results from an international online survey.

OBJECTIVE: To quantify parents' experiences of respectful care around stillbirth globally. DESIGN: Multi-country, online, cross-sectional survey. SETTING AND POPULATION: Self-identified bereaved parents (n = 3769) of stillborn babies from 44 high- and middle-income countries. METHODS: Parents' perspectives of seven aspects of care quality, factors associated with respectful care and seven bereavement care practices were compared across geographical regions using descriptive statistics. Respectful care was compared between country-income groups using multivariable logistic regression. MAIN OUTCOME MEASURES: Self-reported experience of care around the time of stillbirth. RESULTS: A quarter (25.4%) of 3769 respondents reported disrespectful care after stillbirth and 23.5% reported disrespectful care of their baby. Gestation less than 30 weeks and primiparity were associated with disrespect. Reported respectful care was lower in middle-income countries than in high-income countries (adjusted odds ratio 0.35, 95% CI 0.29-0.42, p < 0.01). In many countries, aspects of care quality need improvement, such as ensuring families have enough time with providers. Participating respondents from Latin America and southern Europe reported lower satisfaction across all aspects of care quality compared with northern Europe. Unmet need for memory-making activities in middle-income countries was high. CONCLUSIONS: Many parents experience disrespectful care around stillbirth. Provider training and system-level support to address practical barriers are urgently needed. However, some practices (which are important to parents) can be readily implemented such as memory-making activities and referring to the baby by name. TWEETABLE ABSTRACT: One in four experience disrespectful care after stillbirth. Parents want more time with providers and their babies, to talk and memory-make.

Perinatal bereavement care during COVID-19 in Australian maternity settings.

OBJECTIVES: Perinatal bereavement care is a complex area of practice. The COVID-19 pandemic led to reconfiguration of maternity and perinatal bereavement care services. This study explores Australian health care providers' perspectives of the impact of COVID-19 on the provision of respectful and supportive care following stillbirth or neonatal death. METHODS: Members of a perinatal bereavement care network were consulted at the commencement of the pandemic in Australia using an online feedback form. Respondents provided ratings and free-text comments on the impact of COVID-19 on implementation of 49 recommendations contained in the Perinatal Society of Australia and New Zealand/Stillbirth Centre of Research Clinical Practice Guideline for Respectful and Supportive Perinatal Bereavement Care. RESULTS: Responses were received from 35 health care providers who provided perinatal bereavement care in clinical settings or through support organisations in Australia. Major impacts of COVID-19 were reported for 8 of 49 guideline recommendations. Impacts included reduced: support for mothers due to visitor restrictions; availability of cultural and spiritual support and interpreters; involvement of support people in decision-making; options for memory-making and commemorative rituals; and staff training and supervision. Adaptations to minimise impacts included virtual consultations, online staff training, use of cold cots, and increased staff support for memory-making. CONCLUSIONS: Health care providers encounter substantial challenges as they strive to implement best practice perinatal bereavement care in pandemic conditions. Some practice adaptations developed during the COVID-19 pandemic could benefit parents; however, evaluation of their effectiveness and acceptability is needed.

Building a sustainable rural physician workforce.

CHAPTER 1: CHARACTERISING AUSTRALIA'S RURAL SPECIALIST PHYSICIAN WORKFORCE: THE PROFESSIONAL PROFILE AND PROFESSIONAL SATISFACTION OF JUNIOR DOCTORS AND CONSULTANTS: Objective: To assess differences in the demographic characteristics, professional profile and professional satisfaction of rural and metropolitan junior physicians and physician consultants in Australia. DESIGN, SETTING AND PARTICIPANTS: Cross-sectional, population level national survey of the Medicine in Australia: Balancing Employment and Life longitudinal cohort study (collected 2008-2016). Participants were specialist physicians from four career stage groups: pre-registrars (physician intent); registrars; new consultants (< 5 years since Fellowship); and consultants. MAIN OUTCOME MEASURES: Level of professional satisfaction across various job aspects, such as hours worked, working conditions, support networks and educational opportunities, comparing rural and metropolitan based physicians. RESULTS: Participants included 1587 pre-registrars (15% rural), 1745 physician registrars (9% rural), 421 new consultants (20% rural) and 1143 consultants (13% rural). Rural physicians of all career stages demonstrated equivalent professional satisfaction across most job aspects, compared with metropolitan physician counterparts. Some examples of differences in satisfaction included rural pre-registrars being less likely to agree they had good access to support and supervision from qualified consultants (odds ratio [OR], 0.6; 95% CI, 0.3-0.9) and rural consultants being more likely to agree they had a poorer professional support network (OR, 1.9; 95% CI, 1.2-2.9). In terms of demographics, relatively more rural physicians had a rural background or were trained overseas. Although most junior physicians were women, female consultants were less likely to be working in a rural location (OR, 0.6; 95% CI, 0.4-0.8). CONCLUSION: Junior physicians in metropolitan or rural settings have a similar professional experience, which is important in attracting future trainees. Increased opportunities for rural training should be prioritised, along with addressing concerns about the professional isolation and poorer support network of those in rural areas, not only among junior doctors but also consultants. Finally, making rural practice more attractive to female junior physicians could greatly improve the consultant physician distribution. CHAPTER 2: GENERAL PHYSICIANS AND PAEDIATRICIANS IN RURAL AUSTRALIA: THE SOCIAL CONSTRUCTION OF PROFESSIONAL IDENTITY: Objective: To explore the construction of professional identity among general physicians and paediatricians working in non-metropolitan areas. DESIGN, SETTING AND PARTICIPANTS: In-depth qualitative interviews were conducted with general physicians and paediatricians, plus informants from specialist colleges, government agencies and academia who were involved in policy and programs for the training and recruitment of specialists in rural locations across three states and two territories. This research is part of the Training Pathways and Professional Support for Building a Rural Physician Workforce Study, 2018-19. MAIN OUTCOME MEASURES: Individual and collective descriptors of professional identity. RESULTS: We interviewed 36 key informants. Professional identity for general physicians and paediatricians working in regional, rural and remote Australia is grounded in the breadth of their training, but qualified by location - geographic location, population served or specific location, where social and cultural context specifically shapes practice. General physicians and paediatricians were deeply engaged with their local community and its economic vulnerability, and they described the population size and dynamics of local economies as determinants of viable practice. They often complemented their practice with formal or informal training in areas of special interest, but balanced their practice against subspecialist availability, also dependent on demographics. While valuing their professional roles, they showed limited inclination for industrial organisation. CONCLUSION: Despite limited consensus on identity descriptors, rural general physicians and paediatricians highly value generalism and their rural engagement. The structural and geographic bias that preferences urban areas will need to be addressed to further develop coordinated strategies for advanced training in rural contexts, for which collective identity is integral. CHAPTER 3: SUSTAINABLE RURAL PHYSICIAN TRAINING: LEADERSHIP IN A FRAGILE ENVIRONMENT: Objectives: To understand Royal Australasian College of Physicians (RACP) training contexts, including supervisor and trainee perspectives, and to identify contributors to the sustainability of training sites, including training quality. DESIGN, SETTING AND PARTICIPANTS: A cross-sectional mixed-methods design was used. A national sample of RACP trainees and Fellows completed online surveys. Survey respondents who indicated willingness to participate in interviews were purposively recruited to cover perspectives from a range of geographic, demographic and training context parameters. MAIN OUTCOME MEASURES: Fellows' and trainees' work and life satisfaction, and their experiences of supervision and training, respectively, by geographic location. RESULTS: Fellows and trainees reported high levels of satisfaction, with one exception - inner regional Fellows reported lower satisfaction regarding opportunities to use their abilities. Not having a good support network was associated with lower satisfaction. Our qualitative findings indicate that a culture of undermining rural practice is prevalent and that good leadership at all levels is important to reduce negative impacts on supervisor and trainee availability, site accreditation and viability. Trainees described challenges in navigating training pathways, ensuring career development, and having the flexibility to meet family needs. The small number of Fellows in some sites poses challenges for supervisors and trainees and results in a blurring of roles; accreditation is an obstacle to provision of training at rural sites; and the overlap between service and training roles can be difficult for supervisors. CONCLUSION: Our qualitative findings emphasise the distinctive nature of regional specialist training, which can make it a fragile environment. Leadership at all levels is critical to sustaining accreditation and support for supervisors and trainees. CHAPTER 4: PRINCIPLES TO GUIDE TRAINING AND PROFESSIONAL SUPPORT FOR A SUSTAINABLE RURAL SPECIALIST PHYSICIAN WORKFORCE: Objective: To draw on research conducted in the Building a Rural Physician Workforce project, the first national study on rural specialist physicians, to define a set of principles applicable to guiding training and professional support action. DESIGN: We used elements of the Delphi approach for systematic data collection and codesign, and applied a hybrid participatory action planning approach to achieve consensus on a set of principles. RESULTS: Eight interconnected foundational principles built around rural regions and rural people were identified: FP1, grow your own "connected to" place; FP2, select trainees invested in rural practice; FP3, ground training in community need; FP4, rural immersion - not exposure; FP5, optimise and invest in general medicine; FP6, include service and academic learning components; FP7, join up the steps in rural training; and FP8, plan sustainable specialist roles. CONCLUSION: These eight principles can guide training and professional support to build a sustainable rural physician workforce. Application of the principles, and coordinated action by stakeholders and the responsible organisations, are needed at national, state and local levels to achieve a sustainable rural physician workforce.

Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countries.

BACKGROUND: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of perinatal bereavement practices means that offering a range of options identified as valued by parents has become an important indicator of care quality. This study aimed to describe bereavement care practices offered to parents across different high-income and middle-income countries. METHODS: An online survey of parents of stillborn babies was conducted between December 2014 and February 2015. Frequencies of nine practices were compared between high-income and middle-income countries. Differences in proportions of reported practices and their associated odds ratios were calculated to compare high-income and middle-income countries. RESULTS: Over three thousand parents (3041) with a self-reported stillbirth in the preceding five years from 40 countries responded. Fifteen countries had atleast 40 responses. Significant differences in the prevalence of offering nine bereavement care practices were reported by women in high-income countries (HICs) compared with women in middle-income countries (MICs). All nine practices were reported to occur significantly more frequently by women in HICs, including opportunity to see and hold their baby (OR = 4.8, 95% CI 4.0-5.9). The widespread occurrence of all nine practices was reported only for The Netherlands. CONCLUSIONS: Bereavement care after stillbirth varies between countries. Future research should look at why these differences occur, their impact on parents, and whether differences should be addressed, particularly how to support effective communication, decision-making, and follow-up care.

Risk of emergency hospitalisation and survival outcomes following adjuvant chemotherapy for early breast cancer in New South Wales, Australia.

OBJECTIVE: To examine risk of emergency hospital admission and survival following adjuvant chemotherapy for early breast cancer. METHODS: Linked data from New South Wales population-based and clinical cancer registries (2008-2012), hospital admissions, official death records and pharmaceutical benefit claims. Women aged ≥18 years receiving adjuvant chemotherapy for early-stage operable breast cancer in NSW public hospitals were included. Odds ratios (OR) for emergency hospitalisation within 6 months following chemotherapy initiation were estimated using logistic regression and survival using Kaplan-Meier and Cox proportional hazards methods. RESULTS: A total of 3,950 women were included and 30.6% were hospitalised. The most common principal diagnosis at admission was neutropenia (30.8%). Women receiving docetaxel/carboplatin/trastuzumab (TCH) and docetaxel/cyclophosphamide (TC) were the most frequently hospitalised. After adjustment for demographic and clinical factors, the increased risk of hospitalisation for TCH and TC remained compared with doxorubicin/cyclophosphamide 3-weekly (OR 1.71, 95% confidence interval [CI] 1.24-2.37 and OR 1.47, 95% CI 1.17-1.85 respectively). Five-year overall survival was similar for women who were (92.2%, 95% CI 90.7-93.8) and were not hospitalised (93.1%, 95% CI 92.1-94.1). CONCLUSION: Emergency hospitalisations following chemotherapy for early breast cancer were relatively common, especially following docetaxel-containing protocols. Further examination of reasons for admission is needed to inform actions to improve patient safety.

Single-Arm Longitudinal Study to Evaluate a Decision Aid for Women Offered Neoadjuvant Systemic Therapy for Operable Breast Cancer.

Background: Neoadjuvant systemic therapy (NAST) is an increasingly used treatment option for women with large operable or highly proliferative breast cancer. With equivalent survival outcomes between NAST and up-front surgery, the situation-specific preference-sensitive nature of the decision makes it suitable for a decision aid (DA). This study aimed to develop and evaluate a DA for this population. Methods: A DA booklet was developed according to international standards, including information about adjuvant and neoadjuvant treatment, outcome probabilities, and a values clarification exercise. Eligible women, considered by investigators as candidates for NAST, were enrolled in a multi-institutional, single-arm, longitudinal study. Patient-reported outcome measure questionnaires were completed pre- and post-DA, between chemotherapy and surgery, and at 12 months. Outcomes were feasibility (percentage of eligible patients accessing the DA); acceptability to patients (percentage who would recommend it to others) and clinicians (percentage who would use the DA in routine practice); and decision-related outcomes. Results: From 77 eligible women, 59 were enrolled, of whom 47 (79.7%; 95% CI, 69.4-89.9) reported having read the DA; 51 completed the first post-DA questionnaire. Of these 51, 41 participants (80.4%; 95% CI, 69.5-91.3) found the DA useful for their decision about NAST. Of 18 responding investigators, 16 (88.9%; 95% CI, 74.4-103.4) indicated they would continue to use the DA in routine practice. Post-DA, decisional conflict decreased significantly (P<.01); anxiety and distress decreased significantly; and 86.3% (95% CI, 73.7-94.3) achieved at least as much decisional control as they desired. Conclusions: This DA was feasible and acceptable to patients and clinicians, and improvement in decision-related outcomes was demonstrated when used in combination with clinical consultations. This DA could safely be implemented into routine practice for women considering NAST for operable breast cancer.

Understanding mothers' decision-making needs for autopsy consent after stillbirth: Framework analysis of a large survey.

BACKGROUND: Experiencing stillbirth is devastating and leaves parents searching for causes. Autopsy is the gold standard for investigation, but deciding to consent to this procedure is very difficult for parents. Decision support in the form of clear, consistent, and parent-centered information is likely to be helpful. The aims of this study were to understand the influences on parents' decisions about autopsy after stillbirth and to identify attributes of effective decision support that align with parents' needs. METHODS: Framework analysis using the Decision Drivers Model was used to analyze responses from 460 Australian and New Zealand (ANZ) mothers who took part in a multi-country online survey of parents' experiences of stillbirth. The main outcomes examined were factors influencing mothers' decisions to consent to autopsy after stillbirth. RESULTS: Free-text responses from 454 ANZ mothers referenced autopsy, yielding 1221 data segments for analysis. The data confirmed the difficult decision autopsy consent entails. Mothers had a strong need for answers coupled with a strong need to protect their baby. Four "decision drivers" were confirmed: preparedness for the decision; parental responsibility; possible consequences; and role of health professionals. Each had the capacity to influence decisions for or against autopsy. Also prominent were the "aftermath" of the decision: receiving the results; and decisional regret or uncertainty. CONCLUSIONS: The influences on decisions about autopsy are diverse and unpredictable. Effective decision support requires a consistent and structured approach that is built on understanding of parents' needs.

Inhibition of basal-like breast cancer growth by FTY720 in combination with epidermal growth factor receptor kinase blockade.

BACKGROUND: New molecular targets are needed for women with triple-negative breast cancer (TNBC). This pre-clinical study investigated the combination of the EGFR inhibitor gefitinib with the sphingosine kinase (SphK) inhibitor FTY720 (Fingolimod), aiming to block tumorigenic signaling downstream of IGFBP-3, which is abundantly expressed in basal-like TNBC. METHODS: In studies of breast cancer cell growth in culture, proliferation was monitored by IncuCyte live-cell imaging, and protein abundance was determined by western blotting. In vivo studies of mammary tumor growth used two models: orthotopic xenograft tumors derived from three basal-like TNBC cell lines, grown in immune-deficient mice, and syngeneic murine 4T1 tumors grown in immune-competent mice. Protein abundance in tumor tissue was assessed by immunohistochemistry. RESULTS: Quantitated by live-cell imaging, the inhibitor combination showed synergistic cytostatic activity in basal-like cell lines across several TNBC molecular subtypes, the synergy being decreased by IGFBP-3 downregulation. Suppression of the tumorigenic mediator CD44 by gefitinib was potentiated by FTY720, consistent with CD44 involvement in the targeted pathway. In MDA-MB-468 and HCC1806 orthotopic TNBC xenograft tumors in nude mice, the drug combination inhibited tumor growth and prolonged mouse survival, although this effect was not significant for the gefitinib-resistant cell line HCC70. Combination treatment of murine 4T1 TNBC tumors in syngeneic BALB/c mice was more effective in immune-competent than immune-deficient (nude) mice, and a relative loss of tumor CD3 (T-cell) immunoreactivity caused by FTY720 treatment alone was alleviated by the drug combination, suggesting that, even at an FTY720 dose causing relative lymphopenia, the combination is still effective in an immune-competent setting. Immunohistochemistry of xenograft tumors showed significant enhancement of caspase-3 cleavage and suppression of Ki67 and phospho-EGFR by the drug combination, but SphK1 downregulation occurred only in MDA-MB-468 tumors, so is unlikely to be integral to treatment efficacy. CONCLUSIONS: Our data indicate that targeting IGFBP-3-dependent signaling pathways through gefitinib-FTY720 co-therapy may be effective in many basal-like breast cancers, and suggest tissue IGFBP-3 and CD44 measurement as potential biomarkers of treatment efficacy.

Stillbirths: recall to action in high-income countries.

Variation in stillbirth rates across high-income countries and large equity gaps within high-income countries persist. If all high-income countries achieved stillbirth rates equal to the best performing countries, 19,439 late gestation (28 weeks or more) stillbirths could have been avoided in 2015. The proportion of unexplained stillbirths is high and can be addressed through improvements in data collection, investigation, and classification, and with a better understanding of causal pathways. Substandard care contributes to 20-30% of all stillbirths and the contribution is even higher for late gestation intrapartum stillbirths. National perinatal mortality audit programmes need to be implemented in all high-income countries. The need to reduce stigma and fatalism related to stillbirth and to improve bereavement care are also clear, persisting priorities for action. In high-income countries, a woman living under adverse socioeconomic circumstances has twice the risk of having a stillborn child when compared to her more advantaged counterparts. Programmes at community and country level need to improve health in disadvantaged families to address these inequities.

How participation in surgical mortality audit impacts surgical practice.

BACKGROUND: Surgical mortality audit is an important tool for quality assurance and professional development but little is known about the impact of such activity on professional practice at the individual surgeon level. This paper reports the findings of a survey conducted with a self-selected cohort of surgeons in Queensland, Australia, on their experience of participating in the audit and its impact on their professional practice, as well as implications for hospital systems. METHODS: The study used a descriptive cross-sectional survey design. All surgeons registered in Queensland in 2015 (n = 919) were invited to complete an anonymous online questionnaire between September and October 2015. 184 surgeons completed and returned the questionnaire at a response rate of 20%. RESULTS: Thirty-nine percent of the participants reported that involvement in the audit process affected their clinical practice. This was particularly the case for surgeons whose participation included being an assessor. Thirteen percent of the participants had perceived improvement to hospital practices or advancement in patient care and safety as a result of audit recommendations. Analysis of the open-ended responses suggested the audit experience had led surgeons to become more cautious, reflective in action and with increased confidence in best practice, and recognise the importance of effective communication and clear documentation. CONCLUSIONS: This is the first study to examine the impact of participation in a mortality audit process on the professional practice of surgeons. The findings offer evidence for surgical mortality audit as an effective strategy for continuous professional development and for improving patient safety initiatives.

Predictors of autopsy following stillbirth in Queensland, Australia: A population-based study.

BACKGROUND: Accurate determination of causes of stillbirth is critical to effective prevention. Autopsy remains the gold standard investigation for stillbirth; however, with low autopsy rates many stillbirths are likely to be 'unexplored' rather than 'unexplained'. AIM: To determine factors associated with autopsy following stillbirth. MATERIALS AND METHODS: Routinely collected population-based data on all singleton stillbirths of at least 400 g birthweight or 20 weeks gestation in Queensland between July 2000 and December 2011 were examined. Adjusted odds ratios (aOR, 99% CI) were calculated accounting for sociodemographic, pregnancy and medical factors. Of interest was initially unexplained stillbirth on the death certificate; analysis was stratified by gestational age group (<24, 24-27, 28-36 and ≥37 weeks). RESULTS: Of 3842 singleton stillbirths included in these analyses, 1356 (35.3%) had an autopsy performed. Initially unexplained stillbirth was associated with decreased odds of autopsy at late gestation (28-36 weeks, aOR 0.63 (99% CI 0.42-0.93); ≥37 weeks, aOR 0.53 (99% CI 0.35-0.81)) as was intrapartum stillbirth (<24 weeks, aOR 0.63 (99% CI 0.43-0.94); 28-36 weeks, aOR 0.37 (99% CI 0.14-0.98)). Congenital abnormality (<24 weeks, ≥37 weeks), small-for-gestational age (<24 weeks), and primigravidity (≥37 weeks) were associated with increased odds of autopsy following stillbirth. CONCLUSIONS: Pregnancy factors are associated with stillbirth autopsy. These findings have implications for development of appropriate information for parents and education of clinical staff. Further research is needed into factors influencing autopsy following stillbirth.

Supportive care of women with breast cancer: key concerns and practical solutions.

Patients diagnosed with breast cancer may have supportive care needs for many years after diagnosis. High quality multidisciplinary care can help address these needs and reduce the physical and psychological effects of breast cancer and its treatment. Ovarian suppression and extended endocrine therapy benefits are associated with vasomotor, musculoskeletal, sexual and bone density-related side effects. Aromatase inhibitor musculoskeletal syndrome is a common reason for treatment discontinuation. Treatment strategies include education, exercise, simple analgesia and a change to tamoxifen or another aromatase inhibitor. Chemotherapy-induced alopecia may be a constant reminder of breast cancer to the patient, family, friends, acquaintances and even strangers. Alopecia can be prevented in some patients using scalp-cooling technology applied at the time of chemotherapy infusion. The adverse impact of breast cancer diagnosis and treatment on sexual wellbeing is under-reported. Identification of physical and psychological impacts is needed for implementation of treatment strategies. Fear of cancer recurrence reduces quality of life and increases distress, with subsequent impact on role functioning. Identification and multidisciplinary management are key, with referral to psychosocial services recommended where indicated. The benefits of exercise include reduced fatigue, better mental health and reduced musculoskeletal symptoms, and may also include reduced incidence of breast cancer recurrence. Identification and management of unmet supportive care needs are key aspects of breast cancer care, to maximise quality of life and minimise breast cancer recurrence.

Gestational age specific stillbirth risk among Indigenous and non-Indigenous women in Queensland, Australia: a population based study.

BACKGROUND: In Australia, significant disparity persists in stillbirth rates between Aboriginal and Torres Strait Islander (Indigenous Australian) and non-Indigenous women. Diabetes, hypertension, antepartum haemorrhage and small-for-gestational age (SGA) have been identified as important contributors to higher rates among Indigenous women. The objective of this study was to examine gestational age specific risk of stillbirth associated with these conditions among Indigenous and non-Indigenous women. METHODS: Retrospective population-based study of all singleton births of at least 20 weeks gestation or at least 400 grams birthweight in Queensland between July 2005 and December 2011 using data from the Queensland Perinatal Data Collection, which is a routinely-maintained database that collects data on all births in Queensland. Multivariate logistic regression was used to calculate adjusted odds ratios (aOR) and 95 % confidence intervals, adjusting for maternal demographic and pregnancy factors. RESULTS: Of 360987 births analysed, 20273 (5.6 %) were to Indigenous women and 340714 (94.4 %) were to non-Indigenous women. Stillbirth rates were 7.9 (95 % CI 6.8-9.2) and 4.1 (95 % CI 3.9-4.3) per 1000 births, respectively. For both Indigenous and non-Indigenous women across most gestational age groups, antepartum haemorrhage, SGA, pre-existing diabetes and pre-existing hypertension were associated with increased risk of stillbirth. There were mixed results for pre-eclampsia and eclampsia and a consistently raised risk of stillbirth was not seen for gestational diabetes. CONCLUSION: This study highlights gestational age specific stillbirth risk for Indigenous and non-Indigenous women; and disparity in risk at term gestations. Improving access to and utilisation of appropriate and responsive healthcare may help to address disparities in stillbirth risk for Indigenous women.

Supportive care needs and preferences of lung cancer patients: a semi-structured qualitative interview study.

PURPOSE: Lung cancer patients report both high levels of unmet supportive care need and underutilisation of support services, but the existing literature offers limited understanding of their specific needs and preferences for help. This study aimed to address this research gap through qualitative exploration of the supportive care needs and preferences of lung cancer patients. METHODS: Semi-structured interviews were conducted with ten lung cancer patients recruited from the Chest Clinic, Royal Adelaide Hospital (South Australia). Interviews particularly focussed on four key supportive care domains: medical information, physical symptoms, activities of daily living and emotional needs. RESULTS: Participants reported low use of supportive care services and resources in all four domains. Verbal information from doctors was preferred over printed or online information, and upfront and honest communication was highly valued. Attitude was viewed as important for coping with physical symptoms. Participants demonstrated strong determination to manage activities of daily living independently and, when this was not possible, preferred to seek help from family over external organisations. Support groups and helplines were not utilised for a variety of reasons, although several benefits of connecting with fellow cancer patients were identified. CONCLUSIONS: The reasons behind underutilisation of supportive care services by lung cancer patients are more complex than simple lack of awareness or availability of services. Information about patients' needs and preferences reveals opportunities for service improvement and alternative models of supportive care.

Supporting parents following pregnancy loss: a cross-sectional study of telephone peer supporters.

BACKGROUND: The death of a baby before or soon after birth can place an enormous psychological toll on parents. Parent support groups have grown in response to bereaved parents' unmet needs for support. Peer support is the hallmark of these organisations but little is known about the experiences of volunteers who provide support. This study examines the perceptions and experiences of parent support group volunteers who deliver a 24-h telephone support service for the Australian Stillbirth and Newborn Death Support (Sands) organisation in order to inform the ongoing development and sustainability of effective peer support. This parent-led organisation has delivered support to those affected by miscarriage, stillbirth and newborn death for more than 30 years. METHODS: Twenty-four Parent Supporters completed an online questionnaire. A mix of open- and closed questions asked about aspects of the Parent Supporter role. Quantitative data was summarised using descriptive statistics. Free-text responses to open-ended items were categorised and used to extend and illustrate the quantitative findings. RESULTS: Our findings reveal a group of highly dedicated and experienced volunteers who had taken 473 calls in the preceding 12 months. Calls were diverse but most were from bereaved mothers seeking 'to talk with someone who understands' in the early weeks and months after stillbirth or miscarriage. Most Parent Supporters indicated they felt well-prepared, confident, and satisfied in their role. Challenges include balancing the demands of the role and ongoing training and support. CONCLUSIONS: Peer volunteers contribute to addressing a significant need for support following pregnancy loss. Delivering and sustaining high quality parent-led support depends on volunteer recruitment and retention and this, in turn, requires organisational responses.

Holding a stillborn baby: the view from a specialist perinatal bereavement service.

BACKGROUND: Stillbirth is a profoundly distressing event. Little evidence exists to guide best practice bereavement care in the perinatal setting. AIMS: To document parents' experiences and outcomes in relation to seeing and holding a stillborn baby at a hospital with a specialist perinatal bereavement service. MATERIALS AND METHODS: Prospective cohort study of 26 mothers and 11 fathers who experienced a stillbirth at the Mater Mothers' Hospital, Brisbane from September 2007-December 2008. Mailed self-report questionnaires were completed at 6-8 weeks and 6 and 13 months postloss. Validated measures assessed regret regarding the decision to see and hold the baby, parental grief and mental health. RESULTS: Of 78 fetal deaths, 26 mothers and 11 fathers participated. Most (20 mothers; 9 fathers) chose to see and hold their stillborn infant. Little regret was reported, irrespective of the decision. For mothers, seeing and holding was associated with higher 'active grief' at 6-8 weeks (mean difference (MD) = 10.5; 95% CI = 3.3-17.8; P < 0.01), 6 months (MD = 8.0; 95% CI = 0.6-15.4; P = 0.03) and 13 months (MD = 9.9; 95% CI = 1.8-17.9; P = 0.01), but not with 'not coping' or 'despair', or mental health. Fathers reported poorer mental health but small numbers mean estimates are imprecise. CONCLUSIONS: More intense grief does not equate with poorer mental health for mothers who choose to see and hold a stillborn infant. Fathers' experiences warrant further study. Supported decision-making is important for bereaved parents, and rigorous evaluation of bereavement care is essential.

Health and social correlates of Internet use for diabetes information: findings from Australia's Living with Diabetes Study.

This study investigated the relationship between online information seeking and a broad range of health and social characteristics among a large sample of Australian adults with type 2 diabetes. One in four participants used the Internet for diabetes-related purposes and Internet searching was associated with high patient activation, poor metabolic control, signs of peripheral nerve damage, a recent diagnosis of diabetes and poorer patient-assessed coordination of care. No relationship was found between Internet use and treatment complexity and the presence of comorbid conditions. The findings underline the importance of providing better online health resources and support to diabetes patients, and of targeting potential intervention points where services and information may be particularly beneficial.

Novel serum protein biomarker panel revealed by mass spectrometry and its prognostic value in breast cancer.

INTRODUCTION: Serum profiling using proteomic techniques has great potential to detect biomarkers that might improve diagnosis and predict outcome for breast cancer patients (BC). This study used surface-enhanced laser desorption/ionization time-of-flight (SELDI-TOF) mass spectrometry (MS) to identify differentially expressed proteins in sera from BC and healthy volunteers (HV), with the goal of developing a new prognostic biomarker panel. METHODS: Training set serum samples from 99 BC and 51 HV subjects were applied to four adsorptive chip surfaces (anion-exchange, cation-exchange, hydrophobic, and metal affinity) and analyzed by time-of-flight MS. For validation, 100 independent BC serum samples and 70 HV samples were analyzed similarly. Cluster analysis of protein spectra was performed to identify protein patterns related to BC and HV groups. Univariate and multivariate statistical analyses were used to develop a protein panel to distinguish breast cancer sera from healthy sera, and its prognostic potential was evaluated. RESULTS: From 51 protein peaks that were significantly up- or downregulated in BC patients by univariate analysis, binary logistic regression yielded five protein peaks that together classified BC and HV with a receiver operating characteristic (ROC) area-under-the-curve value of 0.961. Validation on an independent patient cohort confirmed the five-protein parameter (ROC value 0.939). The five-protein parameter showed positive association with large tumor size (P = 0.018) and lymph node involvement (P = 0.016). By matrix-assisted laser desorption/ionization time-of-flight (MALDI-TOF) MS, immunoprecipitation and western blotting the proteins were identified as a fragment of apolipoprotein H (ApoH), ApoCI, complement C3a, transthyretin, and ApoAI. Kaplan-Meier analysis on 181 subjects after median follow-up of >5 years demonstrated that the panel significantly predicted disease-free survival (P = 0.005), its efficacy apparently greater in women with estrogen receptor (ER)-negative tumors (n = 50, P = 0.003) compared to ER-positive (n = 131, P = 0.161), although the influence of ER status needs to be confirmed after longer follow-up. CONCLUSIONS: Protein mass profiling by MS has revealed five serum proteins which, in combination, can distinguish between serum from women with breast cancer and healthy control subjects with high sensitivity and specificity. The five-protein panel significantly predicts recurrence-free survival in women with ER-negative tumors and may have value in the management of these patients.

Randomized controlled trial of a computer-tailored multiple health behaviour intervention in general practice: 12-month follow-up results.

BACKGROUND: Effective strategies to address risk factors of non-communicable diseases are required to curtail the expanding costs of health care. This trial tested the effectiveness over one year of a minimal intervention targeting multiple health behaviours (diet, physical activity, alcohol and smoking) in a general practice setting, through the provision of personalised, computer-tailored feedback. METHODS: Patients who had attended a general practice in the previous 6 months were recruited from 21 general practitioners in Brisbane, Australia. Baseline data were collected using self-reports on adherence to ten health behaviours and summarised into a health score from 0 to 10. This randomised controlled trial used a 2×2 factorial design, with one arm randomising subjects to the intervention or control group. The other arm was either feedback at baseline (single contact) or an additional assessment with feedback at 3 months (dual contact). As such, 4 study groups created were, to which participants were randomised blindly: A. Intervention with single contact; B. Intervention with dual contact; C. Control with single contact and D. Control with dual contact. All participants were assessed again at 12 months. RESULTS: Of the 4676 participants randomised, 3065 completed questionnaires at 12 months. Both single and dual contact groups improved their 10 item health scores (+0.31 and +0.49 respectively) relative to control group outcomes (+0.02; p<0.01). Improvement in adherence to guidelines for fish intake, type of milk consumed, vegetable and fruit intake, and alcohol intake were observed in single and dual contact intervention groups (p<0.01). Both intervention groups showed greater improvement than controls for individual health behaviours, apart from red meat intake, smoking behaviour, physical activity and body weight. Interestingly, there was an improvement in reported non-smoking rates in both intervention and control groups (3% single contact; 4.5% dual contact). CONCLUSIONS: Small but meaningful long-term changes in health behaviours can be achieved with a low-intensity intervention, which may reduce health care costs if implemented on a large scale. Further research is needed to better understand the mechanism by which maintenance of behaviour change can be achieved. TRIAL REGISTRATION: The Australian New Zealand Clinical Trials Registry: ACTRN12611001213932.