Current Research Projects

Implementing and evaluating the impact of the Carer Support Needs Assessment Tool (CSNAT) in community palliative care

Investigators: Aoun S, Toye C, Halkett G, O’Connor M, Grande G, Stajduhar K
Funding: ARC linkage $271,292 (2011-2013).

As part of the International caregiving research collaborative between Australia, UK and Canada, Professor Samar Aoun has secured ARC funding to develop and implement an intervention to improve the unmet needs of family carers in end of life home care, in collaboration with Silver Chain. Home based family caregiving at end-of-life involves high emotional, social, financial and physical costs to the extent that potential caregivers may relinquish the caregiving role and seek the more costly institutional forms of care. Although policies highlight that family carer support needs should be assessed and addressed, this approach is compromised by the lack of rigorously tested, brief but comprehensive assessment tools for use by service providers on a routine basis. The aim of this project is to investigate the extent to which The Carer Support Needs Assessment Tool, trialled by Silver Chain Hospice Care, improves carers’ wellbeing, bereavement outcomes and the likelihood of the patient achieving their preferred place of death.

Meeting the education and support needs of women with breast cancer who are referred for radiotherapy: A multiple-baseline study

Investigators: Halkett G, Spry N, Aranda S, Schofield P, Yeoh E, Jefford M, Jiwa M, O’Connor M, Shaw T.
Funding: Cancer Australia $594,809 (2011 – 2014)

This project focuses on the information and psychological support needs of breast cancer patients prior to receiving radiation therapy. Evidence-based recommendations suggest that 50% of all cancer patients and 83% of breast cancer patients should receive radiotherapy at some stage during their illness. However, utilisation rates of radiotherapy for all cancers in Australia varied between 24% and 71% from 1990-2000 [3]. Reasons for this include lack of access to treatment facilities, inadequate referral for radiotherapy and refusal of treatment by the patient. Patients who do not receive radiotherapy may have a shorter life span and be at risk of disease recurrence.

Patients often present for radiation therapy with feelings of fear and anxiety. It is essential to provide patients with timely information and support before treatment begins in order to reduce their psychological distress. Currently information provision throughout Australian radiotherapy departments varies. There are few well-controlled studies that have investigated outcomes associated with supportive care interventions for patients with serious illness such as cancer. The aims of this study are to examine the effectiveness of an innovative radiotherapy preparatory program, consisting of two one-on-one educational sessions, delivered by radiation therapists to: a) reduce patient psychological distress before treatment; b) reduce specific concerns about radiotherapy; c) increase patient knowledge of radiotherapy; and d) increase patient preparedness for their treatment planning appointment and treatment using a multiple baseline design trial. We will also establish the cost effectiveness of this intervention.

This research has the potential to fundamentally change the way patients are prepared for radiotherapy in Australia and internationally. If this intervention is successful in achieving the expected outcomes, it can be readily adapted to other cancer types and other serious, chronic illnesses. It has already been demonstrated in the pilot study that this intervention is acceptable and can be easily integrated in radiotherapy departments.

Supporting Pre-Adolescents of Parents with Cancer: Exploring a role for ICT & the New Digital Media

Investigators: Knight S, O’Connor M, Garton A, Halkett G, Aoun S.
Funding: Western Australian Cancer and Palliative Care Research and Evaluation Unit, Small Grants Scheme $17,131.88. (2010-11).

The aim of the study is to examine what support role the new digital media (NDM) can play in meeting the psychosocial needs of pre-adolescents (aged 10-12) who have a parent with cancer.

The study will empirically investigate both: (1) the psychosocial support needs of pre-adolescent children of parents with cancer; and (2) how and why this age-group interacts with and adopt specific Information Communication Technology (ICT).

The synthesis of both of these investigations is expected to provide rich evidence to support decision-processes for future Health-IT initiatives developed for pre-adolescents. Specifically, this study will become a pilot to develop a Health-IT intervention to support pre-adolescents who have a parent with cancer, with the potential to become a prototype to develop Health-IT interventions for a variety of cancer sub-populations.

The experiences and psychosocial needs of children 11-16 years of age who have a parent living with MND

Investigators: O’Connor M, Aoun S, Breen L, Colyer S, Harris R
Funding: MND Research Institute $34,983.59. (2010-11).

The aim of this research is to explore the experiences and psychosocial needs of 11-16 year old children and adolescents who have a parent with Motor Neurone Disease (MND). The project will focus on asking children and adolescents which factors promote or inhibit their coping and adjustment, investigate children and adolescents’ unmet needs, and examine the potential role of systems that children and families have contact with—such as schools, primary care settings and the MND Associations (MNDAWA and MND Victoria)—in providing support and information. This data will provide a basis for much-needed support programs for children and adolescents who have a parent with MND.

Barriers to improved cancer and palliative care outcomes for Aboriginal Australians in Western Australia: a service provider perspective

Investigators: Shahid S, Aoun S, Thompson S, Skett K
Funding: Western Australian Cancer and Palliative Care Research and Evaluation Unit, Small Grants Scheme $15,760.47. (2010-11).

Some progress has been made in understanding Aboriginal Australians’ perspectives about cancer and their experiences with cancer and palliative care services. However, little is known about thoughts and perceptions of service providers and their experiences of providing optimal care to Aboriginal people. This study aims to (i) document through qualitative research, for the first time, the perspectives of service providers about Aboriginal clients in WA (ii) identify their experiences and concerns in managing treatments in Aboriginal people, and (iii) explore opportunities to overcome gaps in communication between mainstream service providers and Aboriginal people. The applicant will be building on the work of her PhD thesis by consulting a wider range of service providers and developing cultural safety and information resources and training for health providers who contribute to the quality of care of this disadvantaged group.

Towards Improving Cancer Outcomes for Aboriginal Australians: Cancer Service Providers Experiences with Aboriginal People in Western Australia

Investigators: Shahid S, Thompson S, Aoun S, Bessarab D
Funding: Cancer Council Early Career Research Grants $24,800. (2010-11).

Radiation therapy, prostate cancer and follow-up: enhancing patient enablement

Investigators: Halkett G, Jiwa M, Spry N, Girgis A, Mitchell G, O'Connor M. AI’s Hayne D, Boyes A, Shaw T, Joseph D, Schokker H
Funding: Cancer Australia: 2010 $69,845, 2011 $101,386, 2012 $101,386.

Patients may develop complications after radiotherapy. As numbers of cancer patients increase, radiotherapy departments may benefit from support from GPs in providing follow up care. However, GPs require additional education about radiotherapy to enable them to provide adequate follow-up. During this study researchers will develop and test evidence based guidelines, a GP toolkit and checklists designed to assist GPs in providing follow up care to prostate cancer patients.

The aims of this study are to:

Explore the primary care approach to prostate cancer patients who have completed radiotherapy.
Develop and pilot a GP Toolkit that can be used to assist GPs to manage prostate cancer patients who have received radiotherapy, conduct appropriate follow-up diagnostic tests and refer patients back to radiotherapy only when their needs cannot be addressed locally.
Pilot Structured Checklists that assist GPs to detect symptoms and complications related to radiotherapy and determine what diagnostic tests are indicated.
Assess the feasibility of the intervention (consisting of Evidence Based Guidelines, GP Toolkit and Structured Checklists) for use in general practice.
Test whether the intervention (Evidence Based Guidelines, GP Toolkit and Structured Checklists) improves patient enablement to cope with side effects and lifestyle changes.

The experiences and psychosocial needs of young children who have a mother living with cancer: A qualitative study

Investigators: O'Connor M, Monterosso L, Turner J, Halkett G, Garton A , Breen L AIs Miller L, Durack F, Sidhu R, Tanner P, O'Driscoll K, Green H:
Funding: Cancer Australia 2010 $69298, 2011 $44125.

There is a distinct lack of research with children 6-11 years who have a mother living with cancer. The little research there is has not been conducted with children directly. In response, this research proposes a child-centred, developmentally-appropriate approach, which will provide an essential first step in ascertaining the needs of children of this age group in order to develop a needs assessment tool and appropriate supports and interventions.

Primary care: what is their approach to patients with advanced cancer and those who require radiotherapy?

Investigators: Halkett, GKB, Jiwa M, Currow D, Mitchell G, Spry N, Eng D.
Funding: NHMRC Palliative Care Research Program, Round 3 - Research Development Grant, $50,000

It is recommended that 50-60% of all cancer patients receive radiotherapy at some time in their disease. However, only 38% of all cancer patients receive radiotherapy in Australia. Advanced cancer patients may be missing out on radiotherapy because they are not referred for palliative radiotherapy.

The specific aims of this study are to:

Explore the primary care approach to patients with advanced cancer and particularly those who require radiotherapy
Define factors that influence how Australian GPs respond to symptoms of advanced cancer
Map the patients' perspective on current referral practice for palliative care

This project will be comprised of three stages: simulated consultations with GPs, survey of GPs and patient interviews. These methods will enable researchers to develop an understanding of the primary care approach to patients with advanced cancer and those who require radiotherapy and how patients with advanced disease are referred for treatment

Providing tailored information about radiation therapy for women with breast cancer: a feasibility study

Investigators: Halkett GKB, Spry N, Aranda S, Jiwa M, O’Connor M, Schofield P, Jefford M, Kristjanson L, Richardson S, Kearvell R, Miller L, Shaw T, Morison D.
Funding: National Breast Cancer Foundation, Pilot Study Grant, $96,242.75

Dr Georgia Halkett and the staff at the WACCPC are working with clinician Associate Professor Nigel Spry from Sir Charles Gairdner Hospital in Perth WA and Professor Sanchia Aranda and the Supportive Care Research Group at Peter MacCallum Cancer Institute in Melbourne on a Randomised Controlled Trial funded by the National Breast Cancer Foundation to Provide a tailored information about radiation therapy for women with breast cancer: a feasibility study. The team is trialling the use of a psychosocial education intervention to reduce anxiety prior to commencing radiation therapy. The intervention is based on Level 1 evidence on preparing patients for threatening procedures. Women who are diagnosed with breast cancer fear radiotherapy, and may even refuse treatment as a result. It is essential to provide patients with appropriate information and support before treatment begins. Currently radiation therapists do not follow a standardised procedure for providing information and any information provided is often delivered while the patient is on the radiotherapy planning or treatment couch. This practice is not conductive to information recall and may not be effective in meeting the patients’ information needs.

Dignity Therapy: A Novel Psychotherapeutic Intervention for Motor Neurone Disease (MND) Patients near the End of Life

Investigators: Bentley B, Aoun S, O’Connor M Chochinov H and Feehan N
Funding: ARC Linkage with MNDAWA

PhD student Brenda Bentley (ARC APAI), Professor Samar Aoun and Dr Moira O’Connor are working with Professor Harvey Chochinov from CancerCare Manitoba Canada and the Motor Neurone Disease Association of WA on a project looking at Dignity Therapy for Motor Neurone Disease (MND) Patients near the End of Life. This study proposes to examine a novel intervention, Dignity Therapy, designed to address psychosocial and existential distress among terminally ill patients.

Outcomes of patients with end-stage disease admitted to the intensive care unit - is there a need for palliative care follow-up?

Investigators: Williams T. McConigley R, Leslie G, Dobb G, Aoun S
Funding: Western Australian Cancer and Palliative Care Research and Evaluation Unit, Small Grants Scheme $ 17,620.90. (2010-11).

It may be assumed that patients with end-stage disease who survive intensive care have their health care needs met after hospital discharge, but the truth of this assumption is unknown. This case-control study aims to describe (1) quality of life (QOL) (2) health service utilisation and (3) symptom profile of hospital survivors with end-stage disease after an admission to the intensive care unit (ICU) and compare these outcomes with patients with no end-stage disease. Fifty patients recruited over 3 months will be compared with 50 age and gender-matched patients with no end-stage disease. This information is important to promote the uptake of palliative care in this population, with the aim of alleviating suffering, promoting QOL and supporting patients and their families throughout the disease trajectory. The comparison with other survivors of critical illness will provide much needed information on the effect of an ICU admission for patients with end-stage disease.

A Retrospective Cohort Pilot Study of Intensity of Care, Medical Decision-Making, and Costs in an Acute Care Hospital in Western Australia. (INTENSITY 3)

Chief Investigators: Prof Anne Wilkinson, Ms Helen Walker
Funding Body: Cancer and Palliative Care Research & Evaluation Unit (CaPCREU) and the Department of Health WA Cancer and Palliative Care Network, Sir Charles Gairdner Hospital
Funding Amounts:
$34,262 [WA Cancer and Palliative Care Network]
$16,349 [CaPCREU]
Period of Funding:
September 2010 - August 2011 [DoHWA Ca & Pall Network]
December 2010 - November 2011 [CaPCREU]

There is substantial international evidence that the complexity and intensity of medical care provided to hospitalized patients at the end of life is increasing. In addition, data from the US have identified a strong negative relationship between intensity of health care services and patients’ perceptions of healthcare quality and patient and carer satisfaction, with higher intensity care resulting in lower patient/carer quality of care ratings and worse quality of life reports, regardless of age or disease category. The general consensus is that providing high intensity care to those who die is a waste of resources, of poor quality, inefficient, and leads to the inappropriate use of life-sustaining interventions that may be misaligned with patient or family preferences.[ However, these data remain controversial and situations where more intensive therapies are related to either survival or better outcomes are often ambiguous and poorly documented. Moreover, medical decision-making about treatment for terminally ill inpatients is a complex phenomenon and not well understood. It is not clear to what extent patient/family preferences, hospital culture and/or health professional’s practice patterns influence care at the end-of-life.

The goal of this pilot project are to conduct an initial examination of end-of-life care and medical decision-making for a random sample of deceased patients in one tertiary hospital in Western Australia in order to test the feasibility of the research design and data collection instruments proposed for this project; to inform and improve health service delivery to terminally ill patients not referred to palliative care in the acute care hospital setting; and to provide pilot data for a two State NHMRC intensity of care at the end of life project grant proposal by the investigators in 2011. The specific research aims of this project are to:

conduct a medical record audit of a representative sample (n=270) of inpatients not receiving Silver Chain services (e.g., palliative care in the community), who are in the hospital at least 24 hours, are 18 years of age or older, who die at SCGH between May 15, 2011 to January 15, 2012 to evaluate medical decision-making, the patterns of care, and use of healthcare resources at the end of life during the last hospitalization;
conduct short (15 minute) semi-structured, audio-taped interviews (N=90) with the health professional (e.g., Registrar/Senior Resident/Senior Nurse) most involved in the decedents care during the last hospitalization to identify the clinical factors that may influence end-of-life medical decision-making;
conduct short (20 minute) semi-structured, audio-taped telephone interviews with a subsample (N=90) of the decedent’s Next-of-Kin to understand more about patient and family factors that may influence end-of-life medical decision-making, and
conduct a cost analysis of the care provided to these inpatients to describe the associated health care costs of end-of-life care using WA hospital cost data.

Evaluation Plan Development for the CoNeCT Program; part of the WA Aged Care Directorate FINE Scheme – Friends in Need-Emergency (FINE).

Chief Investigator: Prof Anne Wilkinson
Partner organisations: Dept of Health of WA, Aged & Continuing Care Directorate
Funding Amount: $20,000
Period of Funding: Jan- June 2011

The FINE scheme is a initiative partnering the public health and community sectors that supports a range of service including non-patient acute and complex care and the Government of Western Australia which aims to improve access to health care for older people and people with chronic conditions who could be cared for in their home rather than being admitted to hospital. This framework is targeting the metropolitan complex care coordination service – now known as the “Complex Needs Coordination Team” (CoNeCT). CoNeCT is a new service developed collaboratively across North Metropolitan Area Health Service and South Metropolitan Area Health Service under the auspice of the Department of Health (WA). Complex Care Coordination aims to provide a quality service that targets improving outcomes for patients and their carers whose care and support needs in the community are complex.

An evaluation to assess the degree to which the CoNeCT program meets the goals of the FINE scheme is being conducted under the auspices of the WACCPC and the Dept of Health of WA, Aged & Continuing Care Directorate. The proposed research is intended to inform policy makers and compliment a larger investigation of the range of FINE funded programs, focusing on value for money including financial acquittal and the impact of the programs. The proposed project will make a significant contribution to both policy and program service delivery by conducting a rigorous assessment of the efficiency and effectiveness of the CoNeCT model of care to ensure that public funds are being optimally managed.

An 18 month, quasi-experimental quantitative and qualitative pre/post research design, will assess the degree to which the CoNeCT program demonstrates improvements in patient/carer support, assistance, and appropriateness of service utilisation. Data collected in the usual provision of the service and quality activities will be reviewed in conjunction with information available from patient hospital records, linked data sets, and formal interviews of patients/carers and referrers by external researchers. Economic analysis will analyse the average cost per patient, return on investment (LoS, bed days, admission/presentation rates and program costs) and non-financial benefits including gap analysis within the healthcare system.

Investigating the Impact of an End-Of-Life Pathway on End-of-Life Care and Costs in an Urban Acute Care Hospital [Fremantle LCP Project]

Chief Investigator: Prof Anne Wilkinson
Administering Institution: ECU Industry Collaborative Scheme and the Department of Health WA Cancer and Palliative Care Network,
Funding Amount:
$29,960 (ECU)
$20,000 + $10,000 in kind (DoHWA Ca & Pall Network)
Period of Funding: January 2011 – December 2011

Hospitals are by far the biggest user of financial resources in health, consuming almost 4 in every 10 dollars (39%) of recurrent health expenditure (which, in turn, makes up 95% of total health expenditures).[1] In Australia, 67 per cent of people die in hospital but only a small minority of them (11%) die in a designated palliative care bed. The majority of deaths today are neither sudden nor unexpected, yet the care provided to these patients is often poor.[2,7-13] Patients who die in a hospital or ICU have worse quality of life than those dying at home and their bereaved carers are at increased risk for developing psychiatric illness.[14-15] Nonetheless, improving end-of-life care in the acute care hospital has been shown to be extremely challenging, due to the availability of high-technology care and the authority wielded by local practice patterns on treatment intensity.[16-27] It has been suggested that high healthcare costs might be reduced by decreasing the need and demand for medical services, particularly among terminally ill patients whose deaths are seemingly imminent and which could be anticipated. Efforts to improve both the quality and cost of health care generally have focused on fostering physician adherence to evidence-based clinical practice guidelines and reducing medical errors.[54]

The aim of this study is to determine whether the implementation of the Liverpool Care Pathway (LCP) in an urban, tertiary care hospital results in cost savings to the Department of Health WA.

The research questions to be addressed are:

Does the implementation of the Liverpool Care Pathway (LCP) achieve cost savings in an urban, tertiary care hospital with its curative hospital culture?
Does the implementation of the LCP influence end-of-life multidisciplinary team decision-making for seriously ill patients? and
Does the implementation of the LCP result in next-of-kin being more involved in end-of-life decision-making and more satisfied with end-of-life care?

This project will involve: 1) A retrospective medical record audit of a consecutive sample of 270 inpatient deaths in Fremantle hospital (135 pre LCP and 135 post LCP) to describe the patterns and costs of end-of-life care before and after the implementation of the LCP; 2) A retrospective survey of one member of the health care team (N=140; 70 pre/70 post) most involved in the deceased patient’s end-of-life care to identify barriers/facilitators to the adoption of the LCP and the clinical and hospital-related factors associated with the healthcare Team’s communication and medical decision-making before and after the implementation of the LCP; and 3) A retrospective interview with the deceased patients’ next-of-kin to identify patient and family factors that may influence the acceptance of the LCP, reports of quality and satisfaction with end-of-life care before and after the implementation of the LCP. Potential cost savings can be estimated based on the results of the previous rural study. The number of deaths in the adult population aged 15 years and above in WA in 2008 was 12,593 (ABS, 2010). Assuming (i) 67% of people die in hospital and 11% die in a designated palliative care bed (Palliative Care Australia 2009) and (ii) similar cost savings are achieved from implementing the LCP in metropolitan hospitals as was achieved in rural hospitals, the potential cost savings from implementing the LCP throughout WA would be $3.1 million.

Determining and meeting the needs of Grade III-IV Glioma patients and their carers.

Investigators: Halkett, GKB, Nowak, A, Oldham, L,

Funding: WA Cancer & Palliative Care Network Tumour Collaborative Grants ($60,000).

Administering Institution: Curtin University

Primary brain tumours have a poor prognosis and patients become increasingly physically and cognitively debilitated as the disease progresses. Malignant High Grade Gliomas (HGG) are the most common primary brain tumours in adults (80-85% of all brain tumours), and have median survivals ranging from less than 1 year to 3 years from the time of diagnosis. About 130 patients per year are diagnosed with malignant brain tumours in Western Australia. The majority of patients diagnosed with HGG die from their disease, even if they have received the full range of treatment that is available. Current treatment for HGG involves a combination of surgical resection, chemotherapy and radiation therapy. Complete surgical resection of the tumour is often not feasible; however subsequent chemoradiotherapy and adjuvant chemotherapy improve survival over radiotherapy alone. The realistic aim of treatment is to increase survival time rather than to cure patients

The aims of stage 1 of the project are to: (1) Gain an understanding of patients’ and carers’ experiences of living with High Grade Glioma and (2) Identify and describe the information, support and practical needs of these patients and their carers. The aims of stage 2 of the project is to: Determine the needs of a larger sample of brain cancer patients and their carers as the patient progresses through their treatment.

The overall proposed project is innovative and will benefit to future HGG patients and their carers by identifying perceived and real gaps in resources available to these patients, from the patients’ and carers’ point of view. This information will enable the collaborative to (1) construct guidelines to assist in the care of these patients; (2) lobby for appropriate resource provision and (3) potentially develop evidence-based interventions that can be used to better meet the patients and carers needs. To date, there are no protocols that are available to advise health professionals on information provision and support for these patients and it is not known whether their specific needs are currently being met. Guidelines that are developed will focus directly on the informational, practical and social support needs of patients and will enable health professionals to focus on the needs that have previously been identified by patients and carers. The intervention will be developed in consultation with consumer representatives and will be tested to ensure that it is of direct benefit to patients who are diagnosed with HGG. Findings of this study will also be relevant to other cancer patients and their carers and will lead to additional studies that further address patients and carers needs.

WA Centre for Cancer and Palliative Care