2019 research projects

Coordinare Primary Health Network, South Eastern NSW
October 2018 – October 2019


This project involved Ngarruwan Ngadju researchers working collaboratively with Aboriginal Community Controlled Health Organisations (ACCHOs) in south-eastern NSW on the development and implementation of a community based participatory evaluation and research program, aimed at enhancing the research and evaluation capacity of the participating organisations. This project built on and extended our previous capacity building project by focusing on effective collection, analysis and utilisation of health service data within the regional ACCHOs.

The research and evaluation projects undertaken at a regional level take into account individual service needs through the identification of possible projects. The overall goal of the project is to develop a framework of ‘doing’ evaluation and research ‘with’ ACCHOs.

What we did

The project had four main components. Firstly, we drew from various sources of data and discussion with key staff of each service to identify the ways in which health service data is currently collected and utilised by the services and the systems to capture and report on data. Secondly, we identified staff responsible for data capture and analysis and assisted with capacity building training. Thirdly, we worked collaboratively to provide assistance to the services to monitor and improve data collection and reporting on one specific project. Finally, we conducted a series of training workshops tailored to meet the identified needs of services around data. The final report of the project is being prepared.

Royal Commission into Aged Care Quality and Safety
July – August 2019

Download the Medical Journal of Australia article 'Australian residential aged care is understaffed' (pdf)

Download the report 'How Australian residential aged care staffing levels compare with international and national benchmarks' (pdf)
Eagar K, Westera A, Snoek M, Kobel C, Loggie C and Gordon R (2019) How Australian residential aged care staffing levels compare with international and national benchmarks. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong.


The Royal Commission into Aged Care Quality and Safety was established in October 2018 to inquire into issues such as:

  • the quality of aged care services provided to Australians including the extent of substandard care being provided, the causes of any systemic failures and any action that should be taken in response;
  • delivery of aged care services to younger people living in residential aged care facilities and people with dementia;
  • future challenges and opportunities around delivering accessible, affordable and high-quality aged care services in the context of changing demographics, and within a rural regional context; and
  • the delivery of aged care services in a sustainable way, including through innovative models of care, increased use of technology, and investment in the aged care workforce and capital infrastructure.

To assist the Royal Commission in its work, CHSD was engaged to undertake an analysis of residential aged care staffing practices in other countries to understand how staffing can be improved in Australia.

What we did

This investigation included a literature review on international models of staffing in residential aged care facilities and the use of data from the Resource Utilisation and Classification Study (RUCS) to compare Australian practices to international standards. This analysis contributed to a better understanding of the costs involved in delivering quality care through effective staffing levels in residential aged care facilities.

The final report was publicly released in October and found more than half of all Australian aged care residents are in homes with staffing levels that would be rated one or two stars in the United States’ five-star rating system.

Australian Research Council
April 2015 – February 2019


This overall aim of this project is to evaluate the contribution that Aboriginal Community Controlled Health Organisations (ACCHOs) have on the health and wellbeing of Indigenous peoples and their communities wherein they operate. The Glen Centre, a drug and alcohol rehabilitation service operated by the Ngaimpe Aboriginal Corporation, volunteered themselves to be a living case study. The Glen is a 37 bed, residential drug and alcohol rehabilitation service on the Central Coast, NSW. The service model is holistic, addressing addiction recovery from a ‘whole of person’ treatment perspective and a philosophy that seeks to restore people as active members of the community.

A strategic host of community partnerships situates the Glen in the centre of a social network which enables them to direct a raft of services to their clients as they pursue recovery. This network is also reciprocated by the Glen’s clients who provide work and services back to those community groups. The overall outcome of this relationship is the enhancement of client wellbeing and the social health of the community. This service model also ensures that the Glen can continue to operate as a holistic drug and alcohol service, meeting the needs of their community and Indigenous peoples from all over Australia whom are invited into their program.

What we did

A mixed-methods study approach was applied consisting of; surveys, telephone interviews and a focus group, to capture the insights and experiences of the Glens’ key stakeholders, board, staff and volunteers. We thematically analysed these interviews and found a series of themes emerging from them. An overall summary of these themes are that the Glen was described as a unique, diverse and holistic service that changes the lives of each client as well as being an important contributor to the life of the local community. The strongest themes to emerge across all participants were establishment of partnership, connections, maintenance of partnership, and involvement with community.

This project concluded in 2019, and has contributed to building an evidence base for the effectiveness of an innovative addiction recovery service, demonstrated the valuable contribution that an ACCHO has to their local community, and how organisational capacity can be built with Aboriginal leadership and through community partnerships.

South East Sydney Local Health District (SESLHD)
July 2018 – January 2019


In response to evidence that the complexity of patients being treated within the SESLHD was not being appropriately represented in the morbidity data, the NCCC was commissioned to provide expertise and support in the development and implementation of a pilot clinical documentation improvement (CDI) program at Sutherland Hospital.

CDI is a well-established field in the United States, and has been gaining momentum in Australia over recent years following the implementation of activity based funding by the Australian Government. Accurate and complete clinical documentation is associated with appropriate funding for episode complexity as it is the source of information for the allocation of patient episodes to Diagnosis Related Groups (DRGs) and the calculation of National Weighted Activity Units (NWAUs). It is also associated with improved patient safety and quality outcomes, and better information to support decision making.

What we did

The project commenced in July 2018 with the establishment of the project team and the delivery of an education program to the Clinical Documentation Specialist (CDS); a position that had been newly established at Sutherland Hospital for the CDI initiative. Throughout the project the NCCC worked in close partnership with the CDS and key stakeholders, providing technical expertise, advice and support. The project activities undertaken were involved with the design and implementation of the CDI program, development of engagement strategies, selection of target specialties for the pilot, and identification of data requirements for program evaluation. Data to be utilised included routinely collected data sets, as well as project specific data collections such as staff surveys and documentation audits.

Mentorship was provided to the CDS throughout the project, including weekly telephone support, monthly on site visits, attendance at CDI project team meetings and other ad hoc meetings, to provide support and advice as the program became established within the hospital. Advice regarding evaluation and review measures that would be sufficiently targeted, reliable and robust was provided by NCCC prior to the completion of the project in January 2019.

NHMRC-ARC Dementia Development Fellowship
Duration: 2016 – 2019


This research project has explored to what extent, and by what strategies, Consumer Directed Care (CDC) is delivering positive outcomes, including choice and control for people living with dementia and their carers within the Home Care Packages (HCPs) program.

What we did

Achievements have included:

  1. The development of new accessible tools and a cohesive research approach to include the voice of people with dementia in reporting on their own care-related outcomes
  2. The capacity to monitor outcomes over time for carers of people with dementia and assess the impact of aged care reforms respite.

Findings from studies conducted within this program of research include that:

  • CDC within HCPs appears to be more successful in meeting the needs of people with dementia in lower order domains (e.g. food and drink, keeping accommodation clean and comfortable) than in higher order domains (e.g. social participation and meaningful activities).
  • Service, financial, social, environmental and neighbourhood factors all impact on the ability of CDC HCPs to promote care-related quality of life in people living with dementia.
  • Frequently, the needs of people with dementia were not being met. This was due to inadequate hours for support within their packages. Waiting lists for higher-level packages were experienced, as well as overall budgets not providing sufficient direct support hours especially for higher order needs.
  • Social factors such as having co-resident care are central to and affect outcomes in all care-related domains.
  • Carers have found it more difficult to find respite as a result of the aged care reforms and some CDC care arrangements and have poorer outcomes as a result.

Research activities supported numerous collaborations including international collaborations with the University of Kent and Talking Mats Pty Ltd. The program of research also involved direct consultation and education and training with people with dementia, aged care providers, aged care workers, carers of people with dementia, advocacy groups, and local councils.

Results from this research have been used to inform five government submissions, two dementia policy roundtables, and a submission and appearance before the Aged Care Royal Commission on Quality and Safety. Contributions to knowledge dissemination also included 10 conference presentations and 11 journal publications during the grant period.

University of Wollongong Education Strategies Development Fund
Duration: January 2016 – March 2019


Nationally, Indigenous students are under-represented in Higher Degree Research (HDR) programs. According to the Review of Higher Education Access and Outcomes for Aboriginal and Torres Strait Islander People (Behrendt et al. 2012), the number of Indigenous students enrolled in HDR, as a proportion of all domestic HDR enrolments, was 1.1% in 2010 which is well below the parity of 2.2%. It is widely acknowledged that there is a need to focus on research capacity building for Indigenous postgraduate students across Australia, with the aim of improving enrolment, retention and graduation rates (Moreton-Robinson and Walters 2011). Similar to undergraduate education, the critical issue is retention for under-represented groups in higher education. The Bradley report (2008) emphasises the need to create an environment conducive to building Indigenous research capacity in higher education. At the University of Wollongong (UOW) there are opportunities to improve pathways to HDR programs via undergraduate studies as well as to recruit students through successes in externally funded research.

Working in partnership with University of Wollongong Indigenous (HDR) candidates, HDR Faculty coordinators and staff of the Research and Innovation Division Office, this project aims to (1) identify best practice for recruiting, retaining and achieving successful outcomes for Indigenous PhD students and (2) produce an Indigenous HDR strategy to be implemented into the UOW research environment.

What we did

The project is being undertaken in a staged approach, focusing on the following three key activities:

  • Document how faculties are currently addressing the recruitment and training of Indigenous HDR students at UOW;
  • Review outcomes of training and capacity building for Indigenous HDR students at two Australian institutions that have developed successful strategies: the University of Queensland and the University of Melbourne; and
  • Synthesise the findings to identify approaches to recommend to UOW.

These three activities will enable this project to produce guidelines for UOW, which if adopted would form a strategy for UOW that can be embedded across the HDR environment. The project will draw on national and international links to achieve these objectives and outcomes. It will also draw on the lessons learnt from engagement in initiatives such as the National Indigenous Research and Knowledges Network and the Global Challenges Program over the past four years.

Lifeline Australia

Duration: March 2018 – May 2019


In 2017, Lifeline was awarded $2.5 million to develop Australia’s first SMS-based crisis support service known as Lifeline Text. The objectives of Lifeline Text are to reduce feelings of psychological distress, suicidality and self-harm and promote safety in other areas such as domestic and family violence and/or substance abuse. It is also hoped that the service will increase individual capacity to cope and improve levels of confidence to address issues such as isolation and loneliness.

In March 2018, the CHSD was commissioned by Lifeline Australia to conduct an evaluation of the Lifeline Text pilot trial.

What we did

An evaluation methodology was developed to address an agreed set of evaluation questions. Primary data sources for answering these questions consisted of interviews with Lifeline staff and data collected from help seekers via a follow-up online survey. Secondary data sources included operations data from Lifeline call centres (e.g. call volumes), extraction of relevant data from summary sheets into an evaluation data set, a review of Lifeline Text program documents (e.g. training manuals), and data collected from help seekers via automated text questions both before and after the text conversation. An economic evaluation was also undertaken to consider the costs and benefits for those for whom a suicidal crisis was prevented and others who sought help for a different type of crisis.

In November 2018 an interim report was delivered to Lifeline that highlighted strong levels of support from both Lifeline Australia and the group of highly skilled and well-trained staff delivering the service. Early evaluation findings show that the service is achieving promising outcomes for help seekers. With regards to the economic evaluation, a positive, modest return on investment can be expected from a proposed 24-hour service. This 24 hour coverage carries the largest costs but has the potential to offer the most substantial returns in terms of reduced suicidal behaviour and psychological distress.

A final report was delivered to Lifeline in April 2019.

Australian Government Department of Health
February 2019 – April 2019


Access the four literature reviews produced by CHSD and School of Nursing, University of Wollongong, to support the national Independent Review of Nursing Education — Educating the Nurse of the Future in Australia.

Related journal articles have also been published:

Currie J, Thompson C, Grootemaat P, Andersen P, Finnegan A, Carter M and Halcomb E (2022) A scoping review of clinical skill development of pre-registration registered nurses in Australia and five other English speaking countries. Journal of Clinical Nursing. DOI: 10.1111/jocn.16239

Masso M, Sim J, Halcolm E and Thompson C (2022) Practice readiness of new graduate nurses and factors influencing practice readiness: A scoping review of reviews. International Journal of Nursing Studies. DOI: 10.1016/j.ijnurstu.2022.104208

Thompson C, Halcomb E, Masso M, Williams K and Currie J (2019) Improving evidence based policy for national nursing education reform. Australian Nursing and Midwifery Journal, 26 (8): 52.


The Independent Review, “Educating the Nurse of the Future”, was announced as a measure in the 2018/19 federal budget. This independent examination of the educational preparation of nurses to meet professional registration requirements, was undertaken by Emeritus Professor Steven Schwartz with the support of the Office of the Commonwealth Chief Nursing and Midwifery Officer. It is the first national review of nursing education since 2002.

The Department of Health commissioned a team from the Centre for Health Service Development and School of Nursing, University of Wollongong to complete a series of literature reviews on particular topics identified as highly relevant to the Review. The completion of the literature reviews represented an important initial project phase as these findings informed the consultations with key stakeholders and identified contemporary issues in nursing education that might influence the Review.

What we did

To ensure an appropriate breadth and depth of nursing expertise a national working group of nursing educators and clinicians was established and complemented by an international nursing education advisory team. The national nursing education working group comprised experienced nursing educators and clinicians drawn from across Australia. An international advisory team included three experts in nursing education from the US and UK and this facilitated exploration of the international context.

Each topic had research questions that were specified by the Department of Health. The results of these literature reviews aimed to prompt and inform discussion and conversation about particular issues that in summary relate to:

  1. Fitness for purpose, work readiness and transition to practice
  2. Nursing as a career choice
  3. Clinical skill development
  4. Future directions in health care delivery.

These are important issues for policy development and decision-making about the future of nursing education in Australia. The aim of nursing education is that it adequately prepares nurses of all levels and endorsement, to safely and competently perform their roles; it is from this perspective that these reviews have been framed. The three nursing designations in-scope for these literature reviews are: Enrolled Nurses (ENs), Registered Nurses (RNs) and Nurse Practitioners (NPs).

The public release of the final report and supporting literature reviews occurred in December 2019.

Australian Research Council
April 2015 – February 2019


This research involves an in-depth investigation into the use of Focus Group Discussions in Aboriginal health services research. The aim of this project is to generate knowledge to inform the accountable, culturally appropriate, ethically sound and methodologically rigorous use of Focus Group Discussions in qualitative Aboriginal health service research.

What we did

Ethical approval was obtained to conduct the project in two stages. In Stage 1, after extensive searches of ARC, NHMRC and commissioned research to identify eligible participants, we successfully recruited participants for both categories of participants for Stage 1 of the project. Semi-structured interviews were conducted either face-to-face or over the phone over a period of 24 months, from August 2016 to August 2018. A total of 34 interviews were completed with researchers from universities, research institutes or consultant companies/agencies, and 21 policy makers from across departments at local, NSW and Commonwealth levels. All relevant agencies at the Local Health District, Primary Health Network, NSW Health, Department of Health and Department of the Prime Minister and Cabinet were contacted to participate. Senior staff and managers with designated roles in Aboriginal health were targeted.

All Stage 1 data were entered and classified in NVivo and qualitative data analysis using framework and thematic approaches were undertaken by multiple members of the research team. The preliminary results of Stage 1 were disseminated via an oral presentation at the Australian Institute of Aboriginal and Torres Strait Islander Studies Conference in Canberra in March 2017, and a poster presentation at the NHMRC-Lowitja Institute Symposium 2017.

For Stage 2, Listening to Aboriginal Voices, ethical approval was obtained in June 2016 following discussions with CEOs of several Aboriginal Medical Services in NSW. Recruitment of organisations and participants to Stage 2 continued into early 2018. Two focus groups were conducted with 15 Aboriginal community participants, and a further 13 in-depth interviews were conducted with staff of Aboriginal Community Controlled Health Organisations (ACCHOs).

The major activity for Stage 3 of the project was the hosting of a Knowledge Exchange Forum at the University of Technology, Sydney in October 2018. The workshop brought together stakeholders, researchers, Aboriginal community members, and ACCHOs to engage in a knowledge exchange forum and facilitate the development of a model with culturally effective guidelines and resources for focus group discussion research in Aboriginal health services. The aim of the Knowledge Exchange Forum was to develop a comprehensive, evidence-informed framework for appraising, designing and undertaking focus group discussion research in Aboriginal health service delivery contexts and guidance on associated training; and explore the feasibility of applying such a framework.

Research activities are nearing completion, with the project to conclude in early 2019. A key outcome from the research will be a model for how focus groups research in health services can be conducted, analysed, disseminated and utilised in a way that is consistent with Aboriginal ways of being, knowing and doing.

Australian Government Department of Health
August 2017 – February 2019

Journal article

Eagar K, et al. (2020) The Australian National Aged Care Classification (AN‐ACC ): a new casemix classification for residential aged care. Medical Journal of Australia, doi: 10.5694/mja2.50703.

RUCS overview and reports

The department engaged the University of Wollongong to undertake a Resource Utilisation and Classification Study (RUCS). The purpose of this study was to determine the characteristics of residents that drive residential care costs, and use this information to inform the government’s consideration of future reform options.

The RUCS was completed in December 2018. The Australian Health Services Research Institute (AHSRI) at the University of Wollongong have produced a suite of seven reports on the key elements of the RUCS. Report Six synthesises the findings of the study and consolidates the recommendations.

Report One: The Australian National Aged Care Classification (AN‐ACC)

Report One covers the design and conduct of the study undertaken to develop the Australian National Aged Care Classification (AN‐ACC). It covers the design and use of the AN‐ACC assessment tool and the resource utilisation study undertaken to develop AN‐ACC Version 1, including the preparation and analysis of the data collection. It discusses the results, the classification development process and key outcomes including the statistical analysis and clinical validation.

Download Report One: The Australian National Aged Care Classification (AN‐ACC) (pdf)

Report Two: The AN‐ACC assessment model

Report Two presents detailed findings relating to the external assessment tool and assessment process. This includes the development of the assessment tool using expert clinical panels and a summary of feedback from assessors regarding the use of the tool and the suitability of individual instruments. The skills and competencies required for the assessment workforce and other implications for implementation of the external assessment model are considered as well as triggers and protocols for reassessment.

Download Report Two: The AN‐ACC assessment model (pdf)

Report Three: Structural and individual costs of residential aged care services in Australia

Report Three presents the analysis and findings of Study Two which identified the proportions of total care costs that are fixed (including shared care) and variable (relating to individualised resident care). The analysis focuses on the differences in fixed costs between different types of facilities, characterised by ownership, size, remoteness and service specialisation. It includes an analysis of the drivers of fixed care costs.

Download Report Three: Structural and individual costs of residential aged care services in Australia (pdf)

Report Four: Modelling the impact of the AN‐ACC in Australia

Report Four presents an analysis of modelling the introduction of the AN‐ACC across Australia. This is based on the findings of Study Three. The sampling and assessment data collection process and the casemix of residents in aged care across Australia are described. The focus of this report is on modelling the introduction of the AN‐ACC to replace the ACFI.

Download Report Four: Modelling the impact of the AN‐ACC in Australia (pdf)

Report Five: AN‐ACC: A funding model for the residential aged care sector

Report Five presents the design of a new funding model based on the AN‐ACC. It includes a consideration of other payment issues such as existing payment supplements, a discussion of incentives in funding model design and key issues in implementing the new model.

Download Report Five: AN‐ACC: A funding model for the residential aged care sector (pdf)

Report Six: AN‐ACC: A national classification and funding model for residential aged care: synthesis and consolidated recommendations

Report Six syntheses and consolidates the findings presented in other reports and provides a consolidated set of recommendations.

Download Report Six: AN‐ACC: A national classification and funding model for residential aged care: synthesis and consolidated recommendations (pdf)

Report Seven: AN‐ACC Technical appendices

Report Seven contains detailed data for reference purposes.

Download Report Seven: AN‐ACC Technical appendices (pdf)

Presentation of results (November 2018, March 2019)

View the video of the final presentation of results (March 2019)

View the video of the presentation of preliminary results (November 2018)

  • On the 19th of November 2018, the Department held a stakeholder forum. Professor Kathy Eagar presented the Version 1 of the Australian National Aged Care Classification (AN-ACC). 

Background to the Resource Utilisation and Classification Study (RUCS)

The study consisted of four (originally three) separate but linked sub-Studies.

Study One

Study One comprised a detailed collection and analysis of service utilisation and assessment data for residents and financial data from 30 homes across three regions of Australia, the Hunter region in NSW, metropolitan Melbourne and North Queensland. All residents in these residential care homes were assessed using a tool specifically developed for this study and administered by independent external assessors. The tool was developed based on the advice of four panels of experts from the health and aged care fields and was aimed at capturing the resident care requirements that are likely drivers of care staff time and resource use.

Data were also collected about the services that these residents receive, the amount of time and the type of care staff involved. These data were used to create a ‘casemix’ classification that captured the different care needs groups of residents within Australian residential aged care facilities. Study One also captured information about the proportion of time and costs involved in providing care across all residents generally (shared care). These more general care activities include facility-level supervision, or supervision of dining and lounge rooms, delivering meals and medications etc. This additional analysis informed the design of a funding model that includes fixed (shared care) and variable (individualised care) components. Study One also examined whether there is an initial adjustment period for each new resident that involves a higher level of individualised care inputs and costs.

Study Two

Study Two involved the collection of financial information (expenses only) from a nationally representative sample of homes across Australia. The focus of this study was to identify the characteristics of residential care homes that result in different in levels of fixed cost. The analysis targeted factors such as facility size, geographic location, target populations (e.g. indigenous and CALD groups) and any seasonal impacts. This analysis informed the design of the proposed fixed and variable payment model.

Study Three

Study Three used the results of Studies One and Two to develop and test a new funding model. The classification system developed in Study One was applied to a national sample of aged care facilities, based again on external assessments, to identify a national residential aged care casemix profile. The fixed and variable cost information that resulted from Studies One and Two was used to develop and test of the impact of moving to the new model.

Study Four

Study Four was a supplementary study that was added to measure how the care needs of residents changed over a period of about six months. This involved the reassessment of half the Study One residents plus the capture of any critical events, such as hospitalisations, falls, and re-ablement/restorative care programs. The results of Study Four were used to inform the development of reassessment protocols associated with the outcomes of the RUCS.

Overview of RUCS activities

Study One

The data collection for Study One was completed in the first half of 2018 at the 30 participating facilities. The care time reported by staff in the resource utilisation data collection showed that just over half the care time provided was individual time - supporting the proposed funding model that includes both a fixed payment and a variable payment rate for residents.

The resident assessment, resource utilisation and finance data were used to develop and then test the branching classification. An expert clinical panel was consulted to provide feedback and endorsement of the draft version, and Version 1 of the classification was finalised and delivered to the Commonwealth.

Another outcome of Study One was the confirmation that the assessment tool developed for the study was suitable for use by external assessors and that the external assessment process was acceptable to residents.

Download the following resources:

Study Two

The Study Two data were received from the participating facilities across Australia and was principally been used to determine the fixed cost component of the funding model. This analysis included identifying any facility characteristics that drive care costs.

Study Three

The resident assessments were undertaken throughout October and November 2018 in the participating facilities. The results of the assessments from this representative sample across Australia were used to test the impact of the new funding model nationally.

Study Four

The reassessment of half of the residents that were assessed in Study One has been completed. Analysis of the results measured how the care needs of the residents have changed over the period between the Study One and the Study Three assessments. This work was used to inform the development of reassessment protocols.

For inquiries please contact us.

UOW Community Engagement Grants Scheme
Duration: January 2019 – December 2019


In this project we worked in collaboration with the Illawarra Koori Men’s Support Group (IKMSG) to deliver and evaluate a culturally safe program for Aboriginal students in Years 5-8 as they transition from primary to secondary school. The School Kids Aboriginal Mentoring Program (SKAMP) program involved Local Aboriginal Elders leading education and mentoring sessions to young people. They focused on Aboriginal culture and the importance of respect. The project also enhanced the capacity of the organisation as the Board and UOW staff worked together towards a replicable self-sustaining model of service. The partnership between the IKMSG and the UOW helped to enhance the research and evaluation capacity of the Aboriginal organisation. It also helps build an evidence base about what works within the Aboriginal Community Control sector.

What we did

This project contributed to the building of capacity of IKMSG board and staff. It established new service delivery to a new target audience. A close relationship was built with a local Aboriginal Community Controlled Organisation, and a program was established that positions Elders as mentors in their communities. A final report was submitted to the Communities and Partnerships in December 2019.

University of Western Australia
Duration: August 2017 – December 2019


The Symptom Assessment Scale (SAS) is a validated tool used by palliative care services in Australia which aims to enable patients to self-report on the distress they experience, measuring seven common physical symptoms – sleep, appetite, nausea, bowel function, breathing, fatigue and pain. Assessment of symptoms by direct patient self-reporting is regarded as the ‘gold standard’ to ensure effective assessment and control of symptoms. Patient symptom assessment by proxy may be indicated however, when patients are unable to directly report on symptoms due to a decline in cognitive or physical functioning.

This project investigated patient / proxy rating of the SAS using a retrospective case audit. This audit review built on the evidence base by:

  • Ascertaining the percentage of patient/proxy rating across the country and by state;
  • Ascertaining differences in the percentage of patient/proxy rating between service settings;
  • Ascertaining relationships between Australia-modified Karnofsky Performance Scale (AKPS), language and patient/proxy rating;
  • Investigating inter-rater and intra-rater reliability of the tool.

The findings from this study will assist in the understanding of the incidence of proxy rating, inform training and the relationship of proxy rating to language, diagnosis and functional performance (AKPS).

What we did

Analysis of demographic, clinical assessment (SAS, AKPS, and RUG-ADL) and rater (patient or proxy) data for the whole of each episode submitted by purposively sampled services from different palliative care settings was undertaken.

Following completion of the retrospective case review, testing of a revised SAS tool was undertaken. The overall aim of the revised SAS tool, which combines independently validated numerical, visual, verbal and colour scales, is to improve patient self-reporting of symptom distress. Feedback received from clinicians was overwhelmingly positive.

National Health and Medical Research Council
2014 – 2019


Burns in children can be a devastating injury, causing life-long scarring, severe psychological trauma and loss of function in multiple domains. Aboriginal and Torres Strait islander children experience burns at least double the rate of other children.

Having consistent access to high quality care is fundamental to good outcomes in burns care. There are well documented barriers to access to both tertiary and primary healthcare for Aboriginal and Torres Strait Islander people in both urban and rural/remote settings. However, despite the significant burden of burn injury, to date there has been no work that examines care received, or its impact on outcomes in Aboriginal and Torres Strait Islander children.

What we did 

This study followed a group of Aboriginal and Torres Strait Islander children in four states – New South Wales, Queensland, South Australia and the Northern Territory – who went to a tertiary burn unit following a burn injury. We examined care received (including cost), described the relationship between care and functional outcome, and identified barriers and facilitators to receipt of appropriate, ongoing care.

This research will allow us to work with clinicians, policy makers and community to develop a ‘blueprint’ for reform of services, to ensure Aboriginal children receive appropriate and cost-effective care, and inform service delivery and future programs.

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AHSRI research projects