Decisions to consent for autopsy after stillbirth: Aboriginal and Torres Strait Islander women’s experiences

Abstract Background: The stillbirth rate for Australian Aboriginal and Torres Strait Islander infants is twice that for non-Indigenous infants. Autopsy is the gold standard for fetal investigation, however, parental consent is low. There is little research investigating the drivers of parents’ decision-making for autopsy after stillbirth. Aims: The current study explored the reasons why Aboriginal and Torres Strait Islander women did or did not give permission to autopsy after stillbirth. Materials and Methods: Five Aboriginal and/or Torres Strait Islander women participated in semi-structured interviews. Thematic analysis was conducted within a phenomenological framework. Results: Five themes were identified as reasons for giving permission – to find out why baby died; confirm diagnosis; understand future risk; help others; and doubt about maternal causes. Four themes were identified as reasons for declining permission – not asked in a sensitive manner; not enough time to think; distress about the autopsy procedure; and unwilling to agree. There was a lack of acceptability of the lengthy timeframe for the availability of autopsy results as families usually wait between three and nine months. This lengthy waiting period negatively impacted upon families’ health and wellbeing. Conclusions: It is important for health professionals to understand the factors that parents consider when giving permission for autopsy after stillbirth. It is hoped that an increase in autopsy rate will enhance the understanding of the causes of stillbirth and ultimately decrease the stillbirth rate for Aboriginal and Torres Strait Islander families

A preliminary analysis of the cost-effectiveness of the National Bowel Cancer Screening Program – demonstrating the potential value of comprehensive real world data

Background The complexity and cost of treating cancer patients is escalating rapidly and increasingly difficult decisions are being made regarding which interventions provide value for money. BioGrid Australia supports collection and analysis of comprehensive treatment and outcome data across multiple sites. Here we use preliminary data regarding the National Bowel Cancer Screening Program (NBCSP) and stage-specific treatment costs for colorectal cancer (CRC) to demonstrate the potential value of real world data for cost-effectiveness analyses (CEA).Methods Data regarding the impact of NBCSP on stage at diagnosis was combined with stage-specific CRC treatment costs and existing literature. An incremental CEA was undertaken from a government healthcare perspective, comparing NBCSP to no-screening. The 2008 invited population (n=681,915) was modelled in both scenarios. Effectiveness was expressed as CRC-related life years saved (LYS). Costs and benefits were discounted at 3% per annum.Results Over the lifetime and relative to no-screening, NBCSP was predicted to save 1,265 life-years, prevent 225 CRC cases and cost an additional $48.3 million, equivalent to a cost-effectiveness ratio of$38,217 per LYS. A scenario analysis assuming full participation improved this to $23,395.Conclusions This preliminary CEA based largely on contemporary real world data suggests population-based FOBT screening for CRC is attractive. Planned ongoing data collection will enable repeated analyses over time, using the same methodology in the same patient populations, permitting an accurate analysis of the impact of new therapies and changing practice. Similar CEA using real world data related to other disease types and interventions appears desirable.<br /

Issues using linkage of hospital records and death certificate data to determine the size of a potential palliative care population

BACKGROUND: Studies aiming to identify palliative care populations have used data from death certificates and in some cases hospital records. The size and characteristics of the identified populations can show considerable variation depending on the data sources used. It is important that service planners and researchers are aware of this. AIM: To illustrate the differences in the size and characteristics of a potential palliative care population depending on the differential use of linked hospital records and death certificate data. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: The cohort consisted of 23,852 people aged 20 years and over who died in Western Australia between 1 January 2009 and 31 December 2010 after excluding deaths related to pregnancy or trauma. Within this cohort, the number, proportion and characteristics of people who died from one or more of 10 medical conditions considered amenable to palliative care were identified using linked hospital records and death certificate data. RESULTS: Depending on the information source(s) used, between 43% and 73% of the 23,852 people who died had a condition potentially amenable to palliative care identified. The median age at death and the sex distribution of the decedents by condition also varied with the information source. CONCLUSION: Health service planners and researchers need to be aware of the limitations when using hospital records and death certificate data to determine a potential palliative care population. The use of Emergency Department and other administrative data sources could further exacerbate this variation

An AIHW framework for assessing data sources for population health monitoring: working paper

This paper outlines the Australian Institute of Health and Welfare\u27s (AIHW) assessment framework for determining the suitability of specific data sources for population health monitoring. AIHW\u27s Assessment Framework When identifying potential data sources for population health monitoring, it is important to ensure they are \u27fit-for-purpose\u27. The AIHW has developed a 3-step process to assess potential data sources for population health monitoring: Step 1 collects information about the data source Step 2 identifies the potential to inform key monitoring areas Step 3 assesses the quality of the data, using a modified version of the Australian Bureau of Statistics (ABS) Data Quality Framework (ABS 2009), to determine its \u27fitness-for-purpose\u27 by establishing its utility, strengths and limitations. The assessment framework has been designed for use by the AIHW and others with an interest in assessing new data sources for use in population health monitoring. With adaptation, it may also have wider applications in other sectors or subject areas. For an example of the application of the assessment framework, see the AIHW working paper Assessment of the Australian Rheumatology Association Database for national population health monitoring (AIHW 2014a)

Exploring staff diabetes medication knowledge and practices in regional residential care: triangulation study

Aims and objectives: This study is drawn from a larger project that aimed to identify the staffing and organisational factors influencing the quality of diabetes care for older people living in residential care in regional Victoria, Australia. The focus of the current study is on medication management for residents with diabetes. Background: With a continuous rise in diabetes in the population, there is an associated increase in the prevalence of diabetes in aged care residential settings. However, there is little specific guidance on how to manage diabetes in older people living in institutional settings who experience multiple concurrent chronic conditions. Design: A triangulation strategy consisting of three phases. Methods: A one-shot cross-sectional survey (n = 68) focus group interviews and a case file audit (n = 20). Data were collected between May 2009-January 2010. Findings: Staff knowledge of diabetes and its contemporary medication management was found to be suboptimal. Challenges to managing residents with diabetes included limited time, resident characteristics and communication systems. Additionally, the variability in medical support available to residents and a high level of polypharmacy added to the complexity of medication management of resident. Conclusions: The current study suggests administering medicine to residents in aged care settings is difficult and has potentially serious medical, professional and economic consequences. Limitations to staff knowledge of contemporary diabetes care and medications potentially place residents with diabetes at risk of receiving less than optimal diabetes care. Relevance to clinical practice: Providing evidence-based guidelines about diabetes care in residential care settings is essential to achieve acceptable outcomes and increase the quality of life for residents in public aged care. Continuing education programs in diabetes care specifically related to medication must be provided to all health professionals and encompass scope of practice. © 2013 John Wiley & Sons Ltd

Active adults recall their physical activity differently to less active adults: test-retest reliability and validity of a physical activity survey

Issue addressed: This paper determined the test-retest reliability and criterion validity of a modified version of the Active Australia Survey (AAS) and whether these properties varied across participants' activity levels

Assessment of the Australian Rheumatology Association Database for national population health monitoring: working paper

This working paper uses the Australian Institute of Health and Welfare\u27s recently developed assessment framework to assess the suitability of the Australian Rheumatology Association Database as a potential new data source for population health monitoring of inflammatory arthritis. Summary A wide range of existing data sources could potentially be used to improve our understanding of arthritis in the Australian population. This working paper uses an assessment framework recently developed by the Australian Institute of Health and Welfare (AIHW) to assess the suitability of the Australian Rheumatology Association Database (ARAD) as a potential new data source for population health monitoring of inflammatory arthritis. More than 400,000 Australians have rheumatoid arthritis, the most common form of inflammatory arthritis. This auto-immune disease causes chronic inflammation, pain and swelling of the joints and can greatly reduce a person\u27s quality of life. The ARAD, managed by the Australian Rheumatology Association, is a national registry that collects health information from individuals with inflammatory arthritis. It was primarily established to monitor the benefits and safety of new treatments, particularly the biological disease-modifying anti-rheumatic drugs (bDMARDs). The AIHW\u27s assessment of the ARAD for the purpose of national population health monitoring is that: it has the potential to fill a range of identified data gaps in relation to key questions for monitoring arthritis, including treatment outcomes, disease progression, quality of life and economic impacts it has well established administrative and governance arrangements in place to ensure data quality and compliance with legislative requirements it has limited coverage which could potentially be improved by combining with, or linking to, other similar data sources on balance, it is a data source with the potential to provide useful information for population health monitoring of inflammatory arthritis, particularly if used in combination with, or linked to, other data sources

Potentially avoidable hospitalisations in Australia: causes for hospitalisations and primary health care interventions

The Australian Institute of Health and Welfare (AIHW) described potentially avoidable hospitalisations (PAHs) as “admissions to hospital that could have potentially been prevented through the provision of appropriate non-hospital health services”. The AIHW classify PAHs into three main types: vaccine-preventable, chronic, and acute conditions. In 2009-10, PAHs related to chronic conditions were the most common, due mainly to the high rates of hospitalisations for diabetes complications (24% of all PAHs). Moderately high rates of PAHs were also reported for chronic obstructive pulmonary disease (COPD), dehydration and gastroenteritis, and dental conditions (9-10% of all PAHs)

Children in SAAP : a brief analysis of the national data collection

Consistent with the theme of this edition of Parity, the following article highlights the number of children in the Supported Accommodation Assistance Program (SAAP) and the services provided to them. The data used is published by the Australian Institute of Health and Welfare (AIHW), the national body responsible for SAAP data collection. Despite the limitations of information provided by official statistics, the aim in the following is to explore the national information provided by the annual collection of statistics by SAAP agencies

Comparing the Uncharted: Data Analytics and Insights into Maternal and Neonatal Health Outcomes in Australia

This paper presents a conceptual framework for analysing maternal and neonatal health factors in Australia, with a focus on the Australian Capital Territory (ACT). We explore the impact of various variables, including maternal age, smoking during pregnancy, gestational health, indigenous identity, remoteness, health facility accessibility, and income on mother and child health. Using secondary data from the Australian Bureau of Statistics (ABS) and the Australian Institute of Health and Welfare (AIHW) and quantitative analysis techniques, our research highlights the need for targeted interventions to address maternal smoking and associated risk factors to enhance birth outcomes. Prioritising maternal and newborn health can improve outcomes both within Australia and globally. Notably, maternal smoking adversely affects perinatal mortality. Socio-demographic factors, such as age, ethnicity, and socioeconomic status, exert significant influence on outcomes. These insights offer guidance for policy enhancements in maternal and infant health in Australia, particularly within the ACT