Current Research Projects

Australian Palliative Care Outcomes Collaboration (PCOC)

Collaborating Investigators and Institutions: Eagar K, The Centre for Health Service Development (University of Wollongong); Aoun S, The Western Australian Centre for Cancer and Palliative Care (Curtin University of Technology); Currow D, Department of Palliative and Supportive  Services (Flinders  University); and Yates P, Centre for Health Research (Queensland University of Technology)

Funding: Australian Department of Health and Ageing 2005-2008 ($2,700,000)

Administering institution: University of Wollongong

In collaboration with three other Australian centres, the WACCPC is assisting with the development of a national database of quality care indicators for palliative care.
The aims of PCOC are to:
1.    Develop a national benchmarking system to improve clinical palliative care outcomes in both the public and   private sectors.
2.    Produce information on the efficacy of interventions through the systematic collection of outcomes information in both the inpatient and ambulatory settings.
3.    Develop clinical and management information reports based on: the setting within which the service is provided; patient and carer information; the episode of care; the phase of care or stage of illness, as a first step.
4.    Provide comparative data to participating palliative care providers for benchmarking purposes.
5.    Provide and coordinate ongoing education and training in the use and definition of data items and other outcome measures for participating services.
6.    Provide annual reports that summarise the Australian data.
7.    Aid in the development of research proposals and undertake research as appropriate, to refine the   selected outcome measures over time.

These aims recognise that the collection and reporting of useful and timely information will assist in the development of clinical protocols for palliative care consumers; help the interpretation of consumer outcome and service utilisation data; and assist in the development of quality improvement initiatives and in the interpretation of cost variations between service providers. The national database will enable palliative care services to collect information about their services and have it analysed to help them identify how they may make improvements in quality of care.  This national collaborative project will give palliative care units the opportunity to voluntarily compare themselves with other sites that are similar to them so they can see what the rest of Australia is doing and then change their practices to come in line. This is the first national palliative care collaboration of its kind in the world.

Computerised assessment of cancer patients’ psychosocial wellbeing:  Evaluation of the efficacy of touch screen technology in assessing their psychosocial needs.

Investigators:  Halkett GKB, Jiwa M, Katris P, Arnet H.

Funding: Curtin University of Technology Industry Collaborative Grant – Funded jointly by The Cancer Council of WA and Curtin University of Technology. ($34,996.76)

Administering institution: Curtin University of Technology

Because of the high prevalence of psychosocial morbidity in cancer patients, it is important that their psychosocial needs are routinely assessed. However, despite the development and testing of many instruments to measure cancer patient’s psychosocial wellbeing these are often not used in clinical practice.  Several studies have demonstrated that computerised assessment of patient’s psychosocial needs are a feasible option that can be implemented. This study focuses specifically on the usability of the technology and its impact on the clinical setting. It consists of a feasibility study which will assess recruitment methods, sampling and sampling frame, acceptability and the effect of the intervention on patient management.

Sixty patients with gynaecological cancer who are scheduled to commence chemotherapy will be invited to participate in this study. Patients will be eligible to participate in the study if they: are diagnosed with gynaecological cancer, are 18-75 years of age, are receiving treatment at Sir Charles Gairdner Hospital and can converse freely in English.

Both the control group and the intervention group will be asked to complete the following questionnaires: The Distress Thermometer, the Hospital Anxiety and Depression Scale, The EORTC Quality of Life (CLC-Q30) questionnaire and the Supportive Care Needs Questionnaire. Each of these scales has high internal consistency, reliability and validity. The control group will complete these questionnaires in written form and the intervention group will complete the same questionnaires using the touch screen technology. Demographics from both patient groups will be obtained. Participants will be asked to complete a follow up patient satisfaction survey one week after completing the psychological questionnaires.

Once the questionnaires are completed the Cancer Nurse Coordinator will review the participant’s responses and determine (in consultation with the treating clinician) whether the participants require psychosocial support. The Cancer Nurse Coordinator will be trained in assessing patient’s needs and appropriate referral pathways if patients require support.

All data collected for the technology trial will be entered into SPSS. Descriptive statistics will be used to analyse the data. Comparisons will be made between the control group and the intervention group in terms of responses provided and satisfaction with the method of delivery.

This study will demonstrate the efficacy and feasibility of using touch screen technology as a tool for assessing patients need for psychosocial care. The technology may then be further trialled using a larger randomised controlled trial in a number of clinical sites.

The Contribution of Integrative Therapies to the Comfort of Patients with Cancer.

Investigators: Williams A, Joske D, Steed L, Bulsara C, Nowak A, Oliver D

Funding: New Independent Researcher Infrastructure Support Award Department of Health, Western  Australia ($10, 000)

Administering institution: Curtin University of Technology

The SolarisCare Centre at Sir Charles Gairdner Hospital provides emotional support and complementary therapies for patients with cancer. This qualitative project will explore the value and contribution of the SolaricCare model of integrative therapies to the physical and emotional comfort of patients with cancer. This project will further develop a Western Australian substantive theory of patient comfort in terms of the contribution of integrative therapies. The objectives are to:
1.         Explore and describe from the patient’s perspective, therapeutic and non-therapeutic experiences of integrative therapy.
2.         To identify contexts and conditions in which therapeutic integrative therapy was facilitated or hindered.
3.         To explore and describe patients perceptions of the outcomes ascribed to therapeutic and/or non-therapeutic integrative therapies.
4.         To further develop the substantive theory optimising personal control to facilitate emotional comfort in relation to the SolarisCare integrative therapy model.

Determining indicators for palliative care provision in the life-limiting illness pathway in the last year of life

Investigators: Rosenwax L, McNamara B, Currow D, Aoun S.

Funding: National Health and Medical Research Council (NHMRC) ($344,000)

Administering institution: Curtin University of Technology

With an ageing population and increasing occurrence of life-limiting illnesses, population-based research into the last years of life is critically important. This study seeks to better understand the way that people who were dying of conditions amenable to palliative care (PC) in their last year of life navigated the health care system. The study aims to:
· Determine the critical points in the potential PC pathway for people who have died of cancer and specified non-cancer diseases (phase one).
· Map the critical points in the pathway for people who have died with perceived met and unmet needs (phase two).
· Propose an economically viable model of specialized PC delivery aimed to service those most in need (phase three).

Using the WA Data Linkage System, information from carers acting as proxies for the deceased persons will be linked with Hospital Morbidity and Emergency Department administrative data held by the Health Department of WA, and with administrative data held by Silver Chain Nursing Association. Linked administrative data will be augmented with information from case files held by hospitals and Silver Chain community care to provide data that describes how these decedents navigated health services in their last year of life.

The outcomes of this research will provide valuable guidance to PC providers and policy developers by identifying which people need or would benefit from access to specialized PC and at what point these    services would be best introduced for people suffering from a range of life-limiting illnesses. 

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 of Technology

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.

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

Investigators: Oldham L, Nowak A, Halkett G, Taylor M.

Funding: HOTTAH, COSA ($25,000)

Administering Institution: Curtin University of Technology

This additional funding has enabled us to extend the above described study and collect additional data about the needs of HGG patients and their carers.

As described above the current study is designed to determine whether brain cancer patients’ and their carers’ needs are being met and whether they are currently satisfied with the services that they are receiving during treatment. This study will provide pilot data that will inform the future care of brain cancer patients and their carers. Furthermore, the results of this study will enable the researchers to collaborate with national researchers and submit a strong research grant to the National Health and Medical Research Council and or the Australian Research Council and move towards national leadership in this area of cancer research.

Developing an EORTC quality of life module for proctitis

Investigators: Spry N, Aoun S, Halkett GKB.

Funding: Edith Cowan University Industry Collaborative Scheme and Sir Charles Gairdner Hospital  ($60,000)

Administering institution: Edith Cowan University

The aim of this research is to develop a questionnaire module to assess the health-related quality of life of patients with proctitis, and the impact of treatment on patients’ lives. Proctitis is a condition arising from cancer treatment as a consequence of radiation to the pelvis and can have profound social and psychological consequences for patients and their family. This research provides the opportunities to work with an international group of scholars (EORTC Quality of Life Group) and contribute to the international body of literature on quality of life measures that will be used in cancer clinical trials.

The project consists of four phases:

  • Generating Quality of Life (QoL) issues by conducting semi-structured interviews with health care providers and affected patients
  • Operationalisation of the QoL issues into a set of items
  • Pre-testing of the module with patients in Australia and internationally
  • International field testing of the module so that it can be used in Clinical Trials

Results to date: During phase 1 of the study a list of 38 potentially relevant Quality of Life issues was developed and then compiled into the following seven categories: Incontinence (Flatus, Mucous, Solids, Liquids, Nocturnal); Pain (Abdominal bloating, pain and cramps, anal pain, rectal pain); Bleeding (per rectum – fresh or dark clots); Social Function (Limits social engagements as fear incontinence and needs to stay close to toilet); Role and Performance (Limits daily activity as fear incontinence and need to stay close to toilet, difficulty bending due to bowel problem, avoid certain foods); Fatigue (Reduction in energy due to bowel problem) and Emotional Function (Feeling anxious, frustrated, unattractive, embarrassed).  Interviews were conducted with seven health care providers and 10 patients to determine the relevance of each item and which items should be included in the module.

During phase 2 the items selected were compared with the EORTC item bank to determine which items should be included as questions in the proctitis module. Twenty five questions were developed to be tested with a sample of patients.

Phase 3 was divided into two stages. During stage 1 ten patients and five health professionals were interviewed and asked to complete the questionnaire. Analysis of this data identified that 9 questions needed to be rephrased and two questions needed to be deleted. The revised questionnaire was then further tested with 18 patients and data analysis showed that the questionnaire required no further changes.

The questionnaire has now been translated and pilot tested in the following languages Norwegian (n=15), German (n=15), Italian (n=20) and French (n=11). Following analysis of the data, the survey was amended and has now been approved by the EORTC. Additional funding has been obtained from the EORTC to commence large scale field testing (phase 4) in these countries.

Development and implementation of an educational program to guide palliative care for people with Motor Neurone Disease.

Investigators:  Kristjanson L, Aoun S, Oldham L, Currow D, O’Connor Margaret

Administering Institution:  Curtin University of Technology

Funding: NHMRC Palliative Care Grants Program ($250,000)

The project aims to improve the quality of care for people with MND and their family carers through the development, testing and implementation of an educational program for health professionals and other service providers focused on the palliative care needs of this population.
This research will improve our understanding of service provision for this disease group, giving them    dignity while living and dying. The anticipated outcomes will be:

  • improvement in the knowledge of health professionals regarding MND and their confidence to provide care to this population; patient outcomes (e.g., symptom control, quality of life) and family outcomes (eg., family care satisfaction, carer’s confidence in care team).
  • more appropriate and flexible approaches to care  to address significant gaps in approaches to palliative care for this under-served population.
  • a train-the-trainer model that can be adapted and tailored for education of palliative care health professionals with respect to care of individuals with other neurodegenerative conditions.
  • to facilitate more appropriate and smoother care transitions between care settings, improve collaboration between services involved in providing care to the MND population and should help build more effective linkages and more coordinated care.
  • MND Associations in each of the three states working collaboratively with key palliative care service providers in the local communities to develop and implement a flexible model of service for individuals with MND and their families. augmented existing resources rather than create new services. The services will incorporate the information from this project into existing educational offerings and tailor their services to more appropriately meet the needs of this population.

The effectiveness of the flexible model of care provided to people with MND and their carers as a result of the implementation of the MND Education Program will be assessed and a national implementation plan will be developed.

Development of guidelines for a palliative approach for aged care in the community setting.

Investigators: Toye C, Tieman J, Oldham L, Kristjanson L, Currow D, Hegarty M & Abbey J.

Funding: Tender let by the Australian Government Department of Health and Ageing ($457,582).

Administering Institution: Edith Cowan University

A palliative approach to care for older adults in the community with life limiting illness, frailty, or extreme old age aims to promote quality of life in this group; it addresses physical, psychosocial, and spiritual symptoms plus family needs, including needs occurring due to bereavement. This project, funded by the Australian Government Department of Health and Ageing (DoHA), provides community documents that will provide similar practitioner direction to the Guidelines for a Palliative Approach in Residential Aged Care (DoHA, 2006).

A national consultative process and reference group advice guided the project.  There have been several concurrent approaches to document development. Questions relevant to service delivery in the community setting and the support of family carers were addressed with systematic reviews and resulted in evidenced based guidelines. For the domains of Spiritual Support, Psychosocial Support, and Advance Care Planning literature reviews were examined and recommendations without such a strong evidence base, Good Practice Points (GPPs), developed. For domains specific to Aboriginal and Torres Strait Islander peoples, culturally and linguistically diverse populations, groups with perspectives requiring special consideration (e.g. veterans), and clients with Motor Neurone Disease or advanced Parkinson’s disease relevantliterature was discussed, leading to GPP development. For the domain of Symptom Assessment and Management, clinical practice guidelines were reviewed and links to these included as appropriate.  Throughout the document, additional GPPs are included that are based upon expert opinion. The main document is for community health care professionals; a plain English version is being compiled that is mainly for care workers and family carers.  These documents provide comprehensive guidance for a palliative approach to care in the community setting, thus helping to facilitate quality care for older adults.

Dignity intervention for terminally ill patients (Palliative Care Support Study).

Investigators: Chochinov H, Kristjanson L J & Breitbart W.

Funding: National Institutes of Health United States 2004-2008 ($US1,600,000)

Administering institution: University of Manitoba

One of the greatest challenges facing palliative care today is how to address suffering of dying patients, particularly suffering that derives from psychosocial, spiritual or existential domains of the patients’ experience.  Patient distress associated with symptoms such as pain, nausea, dyspnoea, and even to a degree depression and anxiety, have been the focus of some targeted research. Less is known about how to address sources of distress outside of these traditional domains. Over the past fifteen years, this collaboration has developed, manualized and pilot tested and refined a novel individual, brief intervention called Dignity Psychotherapy. This intervention is based on an empirically derived theoretical model developed from our qualitative and quantitative work on dignity in the terminally ill.

The WACCPC is one of three sites participating in a multi-centred international randomized control trial taking place in Winnipeg Canada, Perth Australia, and NYC, New York.  The randomized, controlled trial (2004-2008) was used to investigate the impact of Dignity Therapy, compared to two non intervention arms—client centred visits (addressing ‘here now’ issues and controlling for face to face nurse visitor time) and standard care--on the sense of dignity, desire for death/will to live, suffering, sense of meaning, purpose, generativity and overall quality of life for patients who are terminally ill. Until now, the primary evidence supporting the role for Dignity Therapy in palliative care was based on a Phase I, non-controlled trail. The current study provides much more compelling evidence, based on a randomised control design. These study results further establish the important role of this novel, individualized intervention and its ability to lessen various dimensions of suffering for dying patients and their families.

Since commencing this multi-centred international randomized control trial in Winnipeg Canada, Perth Australia, and NYC, New York, the results from our phase I trial have been published, appearing as a lead article in the Journal of Clinical Oncology [2005;23(24):5520-5525]. An accompanying editorial hailed this study as “a major contribution to advancing care for the terminally ill” (Dr. Betty Farrell. JCO. 2005;23:5427-5428). As a result of this positive reception, this study received international lay press coverage. This in turn generated a great deal of interest from around the world on how to apply Dignity Therapy to dying patients (e.g. China, Japan, several European countries [Italy, Switzerland, Spain, Portugal] as well as centres across the United States and Canada). More than ever, this global response indicates the need to generate solid, empirical evidence that addresses the role of Dignity Therapy amongst patients who are nearing death and their soon to be bereft loved ones. That is in fact the primary mandate of this current NIH funded RCT.

Several clinical sites in Perth helped with recruiting participants in both the pilot and RCT, these included: Silver Chain Hospice Care Service, The Cancer Council WA, St John of God Murdoch and Subiaco, Hollywood Private Hospital and Sir Charles Gairdner Hospital. These sites and many other sites across Australia are waiting for the results of the RCT before they can introduce Dignity Therapy into practice.

Follow up of breast cancer patients: is there scope to engage primary care?

Investigators: Jiwa, M, Halkett, GKB, Weir, J.

Funding:  WA Cancer & Palliative Care Network Tumour Collaborative Grants, WA Dept of Health ($59,787.43)

Administering institution: Curtin University of Technology

In most countries breast cancer patients are offered follow-up appointments after breast cancer treatment. The terms “follow-up” and “surveillance” are synonymous when describing the care received after primary treatment for breast cancer. The process of providing this follow-up varies from clinic to clinic, country to country, and there is little evidence to support a single model of practice. Within Australia the procedures that are used for the follow-up have evolved historically with scant data or benchmarks for quality. Among the various centres and specialists in WA a wide variety of follow-up programs and protocols are observed. Patients are often followed up by the surgical team (breast centre), radiation oncology and sometimes also medical oncology. Patients often appear unaware of the time line for follow-up and are confused by the roles of the various different disciplines involved. Consequently follow-up programs in WA tend to be fragmented and confusing, particularly for patients and GPs.

Traditionally, the goals of breast cancer follow-up include the early detection of local recurrence, screening for a new primary breast cancer, examination of the patient for treatment-related toxicities and to provide psychosocial support. Best practice for breast cancer follow-up should be considered in terms of: Patient involvement in care; Reductions in morbidity and mortality; Cost effectiveness of service  provision[4]   Research indicates however, that often the main focus of follow-up is detecting distant recurrences of cancer at an early stage so treatment for this may commence but no other goals.  Despite the process of seeing patients at follow-up, research consistently demonstrates that up to 75% of breast cancer recurrences are detected by the patient themselves and are reported either during the interval between, or at the time of the scheduled visit for follow-up. In addition, 60-80% of recurrences of breast cancer occur during the first three years following diagnosis and treatment and therefore, the value of ‘intensive’ follow-up in later years may be questionable.

Although clinicians in the primary and tertiary care settings are currently involved in follow-up care for breast cancer patients in WA there is a lack of research about how these patients interact with specialist breast nurses or GPs during follow-up or deploy other services in primary care. Furthermore, there is no research describing how the tertiary and primary care settings work (together or separately) to meet the needs of these patients in the local setting. The aims of the proposed study are therefore:

  • To evaluate the use of nurse-led clinics in the breast cancer centre at Sir Charles Gairdner Hospital
  • To evaluate the use of patient held record of follow-up
  • To determine the pattern of consultation in primary care in the first year after patients have completed treatment. To define which signs and symptoms patients present to their GP
  • For the same group of patients to quantify the number of such signs and symptoms also reported at annual follow-up in the breast cancer clinic
  • To explore the perspectives of practitioners at each setting on facilitators and barriers to follow-up for breast cancer.

This project will enable investigators to report, in more detail than previously, the follow-up needs of breast cancer patients and how these needs may be addressed by different service providers involved in their care. This study will also document how the primary and tertiary settings work as group to meet the patient’s needs and facilitate an understanding of both the patient’s and professional’s experience of follow-up. Once an understanding of the role of different health professionals is clarified it will be possible to suggest further innovations in the follow-up of breast cancer patients.

Investigating the role of Community pharmacists in advising patients with lower bowel cancer symptoms.

Investigators: Jiwa M, Sargant, S.

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

Administering institution: Curtin University of Technology

More than 52,000 Western Australians are currently living with some form of cancer and about 20% of those live in the country.  Medical research shows that people diagnosed with cancer who live in remote areas are 35% to 300% more likely to die within the ensuing five years than cancer patients who live close to health services. The health seeking behaviour of symptomatic patients includes purchasing over the counter medication at community pharmacies. This practice may be inappropriate and some patients may defer a consultation with a medical practitioner to the point where the prognosis is adversely affected especially in the case of cancer symptoms1.  However the logistics and the practice of offering unsolicited advice associated with the sale of medicines is contentious. With the current programme of deregulation of medicines, this is an increasingly important issue. At the same time it has been suggested that the Australian health care system needs to encompass new models of care, new approaches to workforce, new funding and remuneration systems.2

This three-part study explores organisation and linkages within the Primary Health Care Sector. We will specifically explore the prospect of ‘role innovation’ and ‘role enhancement’. We will investigate the possibility of community pharmacists providing appropriate advice to patients presenting with recognised and important symptoms in primary care especially in rural areas where access to medical practitioners may be hampered by a shortage of medical manpower. The scope of the project includes an exploration of the scope for service innovation and how it can be achieved with reference to the key stakeholders. The qualitative data will be analysed using the framework approach, which is specifically designed for health policy research. We will identify and explore the perceived barriers and facilitators that pertain to expanding the role of community pharmacists in advising patients presenting with symptoms that may potentially indicate life threatening illness.

Implementation and evaluation of Dignity Therapy in Denmark.

Investigators: Groenvold M, Houmann L J, Chochinov H M, Kristjanson L J, Hansen R & Pedersen L.

Funding: Psychosocial Research Committee, the Danish Cancer Society ($350,000)

Administering institution: Denmark

Inspired by the promising results from the phase 1 study of dignity therapy, a Danish research group decided to implement the intervention in different hospital and hospice settings in contact with patients with palliative care needs.  In detail the Danish project has three purposes:

· To describe the prevalence of loss of dignity and different dignity-related problems among 240 patients with incurable cancer. This part of the study will describe the need for an intervention such as Dignity Therapy.
· To offer Dignity Therapy to a minimum of 80 patients with incurable cancer.
· To adjust and evaluate this intervention in relation to Danish patients with incurable cancer and their relatives.

The descriptive part of the study will be conducted using questionnaires. The evaluations take place by repeating the questionnaires from the first part of the study in combination with a satisfaction questionnaire. Ideally the evaluation will be done twice with the patient and once with one of the receivers of the Dignity Therapy document. If Danish cancer patients have a need of, an interest in, and benefit from Dignity Therapy then it is expected that health care professionals will have improved the type of palliative care offered, with a specific focus on the most important issues for patients with life-threatening disease and their relatives.

Implementation of sustainable evidence-based practice for the assessment and management of pain in aged care residential facilities.

Investigators:  Gibson S, Nay R, Abbey J, Goucke R, Toye C, Kristjanson L, Scherer S, McConigley R.

Funding:  Australian Government Department of Health & Ageing Encouraging Best Practice in Residential Aged Care (EBPRAC) Program.  ($1,153,480.90).

Administering institution:  National Ageing Research Institute (NARI)

International and Australian studies have shown that pain in older people in residential aged care is often unrecognized and under treated, particularly for those with dementia. In response to this problem the Australian Pain Society (APS), initiated a project in 2002 to develop guidelines to improve the assessment and management of pain in residential aged care facilities. NARI played an important role in the development of these guidelines entitled “Pain in Residential Aged – Care Facilities: Management Strategies” and with support from the department of Health and Ageing (DoHA) piloted the recommended assessment tools at the Royal Freemasons Homes of Victoria. A further grant from DoHA to Edith Cowan University has supported the subsequent development of a user-friendly toolkit version of this guideline and these resources have been distributed to every residential aged care facility in Australia.

Now that the necessary evidence based documents and tools are available there is an urgent need to establish an effective and sustainable implementation strategy for pain assessment and management for the residential aged care setting.

This new project is aimed at achieving this outcome and is to be conducted for the Australian Government Department of Health and Ageing as part of the “Encouraging Best Practice in Residential Aged Care” program. NARI is the lead organisation in a multi-disciplinary partnership of six research organisations, and five residential aged care facilities across Victoria, Western Australia and Queensland.  The participating residential aged care facilities include a mix of high and low care, small and large facilities, metropolitan and regional facilities.

The project will include an initial facility specific audit which will involve collection and analysis of current pain incidence and management practice, description of pain documentation and management protocols and a survey of staff, residents and family. This will be followed by 1:1 on the job education and training aimed at improving the knowledge base of all staff in assessment and management of pain as well as the appointment and professional development of an expert in house “pain champion” nurse at each facility. The final phase of the project will address the issue of practicability and sustainability of the newly developed implementation approach and development of system wide strategies throughout the residential aged care sector.

Improving the psychological function of family caregivers of palliative care patients: A randomised controlled trial

Investigators: Hudson P, Trauer T, Kelly B, Oldham L, Kristjanson LJ, Hall C, Summers M, White V, Norstrom C.

Funding: NHMRC Palliative Care Research Grant ($300,000)

Administering Institution: University of Melbourne

Support for family caregivers during the caregiving phase and into bereavement is a core element of palliative care philosophy and practice. The majority of people report a preference to be cared for at home yet only about a quarter of Australians receiving palliative care services have a home death. Family caregivers provide the bulk of support to patients receiving palliative care at home and without this contribution the well-being of patients and their capacity to remain at home would be compromised. Many research studies have acknowledged the negative psychological, physical, social and financial impact experienced by family caregivers who care for a relative requiring palliative care at home. Family caregivers report a variety of unmet needs throughout the palliative care and bereavement process, despite input from health care services and have been referred to as ‘hidden patients’.  Support for family caregivers is often crisis driven.  Resource issues in rural areas add to the challenges of providing optimal family centred support.  Hence, it is difficult to claim that palliative care services pro-actively provide effective targeted support for family caregivers and for the most part, family situations with unmet needs prevail.

Family caregivers want information that prepares them for what is involved in supporting a dying relative, on how to provide patient comfort, practical care needs and strategies to minimise their own psychological burden. Our study specifically responds to these identified needs by evaluating a home based intervention that aims to enhance the psychological well-being of family caregivers. Family caregivers will receive two home visits from a palliative care nurse, written resources and phone support. A care plan will be developed in partnership with the local palliative care service.

Management of significant personal and interpersonal problems in cancer: a simulated consultation study,

Investigators: Jiwa, M, Halkett GKB, Merriman, G.

Funding: WA Cancer & Palliative Care Network Tumour Collaborative Grants ($62,513.43).

Administering institution: Curtin University of Technology

The most common psychological issues experienced by patients who have received treatment for cancers in the pelvic region (e.g. Prostate Cancer, testicular cancer and gynecological cancers) include: low self esteem, disruption of body image, loss of sexuality, altered role function, fear of rejection, fear of pain, and disfigurement. Furthermore, the World Health Organisation has declared that sexual health is an essential part of overall health.

Once diagnosed with cancer, patients have varying amounts of contact with a range of health professionals who potentially all could discuss the impact that treatment is going to have/or is having on their sexual functioning. Furthermore, the NICE Guidelines on improving supportive and palliative care for adults with cancer, recommend that patients should be provided with opportunities to discuss sexual issues with health professionals involved in their cancer treatment. However, patients continue to report that this issue has not been discussed adequately with them during their cancer experience.

As a first step in trying to better meet patients’ sexual and intimacy needs, it is necessary to consider what role the patients’ general practitioner could/or should routinely play in discussing this issue with patients. However, it is not known whether Australian General practitioners are adequately trained and equipped to assist patients who have received radiation therapy to the pelvis and provide the sexual advice that these patients require. The role of general practitioners in assisting cancer patients to deal with sexual and intimacy issues throughout the disease trajectory needs to be further investigated so that the needs of these patients can be better met.

The aims of this study are to therefore:
· Evaluate how General Practitioners approach the issue of sexuality and intimacy with cancer patients before and after they have received radiation therapy
· Compare the content of consultations and the consultations performance between general practitioners and counselors experienced in educating patients about sexuality and intimacy following radiation therapy
· Develop guidelines to assist general practitioners in supporting patients to deal with sexual and intimacy issues following radiation therapy to the pelvis.

The proposed project will be of benefit to cancer patients who are living in Western Australia. Once we have an understanding of how General Practitioners approach the issue of sexuality and intimacy with cancer patients it will be possible for us to (1) Develop guidelines to assist General Practitioners in supporting patients to discuss these issues and (2) Run workshops to educate general practitioners and assist them to adequately discuss these issues.  Ultimately, this project will lead to improvements in the communication between health professionals and cancer patients about sexuality and intimacy and therefore the patient’s quality of life following treatment.

Palliative Care Clinical Studies Collaborative (PaCCSC)

Investigators Prof David Currow, Tania Shelby-James, Debra Rowett, Geoff Gourlay, Simon Eckermann, Amy Abernethy

WA Investigators: Oldham L, Eng D. 

Funding: Commonwealth Department of Health and Aging

Administering Institution: Flinders University

The Australian Government Department of Health and Ageing has provided investment and is supporting the development of the Palliative Care Clinical Studies Collaboration to allow the conduct of palliative care multi-site clinical drug trials. The data collected from the trials may allow relevant medicines used in palliative care to be registered on the ARTG and ultimately result in the medicines being listed through the PBS.  This infrastructure development will also provide capacity for other clinical and non-clinical research in palliative care to be supported in the future.
The Collaborative aims to:
· develop a clinical research agenda to facilitate the registration of palliative medications with the Therapeutics Goods Administration (TGA).
· facilitate clinical comparison trials and pharmacological data for Pharmaceutical Benefits Advisory Committee (PBAC) submissions
· develop national partnerships with experts in trial design, clinical collaboratives, medical device and pharmaceutical companies
· conduct rigorous, prospective clinical studies with economic analyses to support PBAC and TGA submissions.

The Palliative Care Clinical Studies Collaborative (PaCCSC) is comprised of the following organisations /agencies as member for Phase 3 studies:

  • Flinders University/Southern Adelaide Palliative Services (SAPS)
  • Sydney Cancer Centre
  •  Sydney South West (western zone) Area Palliative Care Service – Liverpool Palliative Care Services
  • WA Centre for Cancer and Palliative Care (WACCPC)
  • .Centre for Palliative Care Research and Education (CPCRE)/QUT/Mater Health Service
  • Peter MacCallum Cancer Institute (Peter Mac)

These trials will focus initially on the following drugs: Ketamine, Megesterol Acetate, Octreotide, and Risperidone - the selection of these drugs followed a rigorous process.

The WACCPC was involved in 4 PaCCSC projects during 2008 including:

1. A randomised, double-blind placebo controlled study of subcutaneous ketamine in the management of cancer related pain

Ketamine is a medication usually used as an anaesthetic agent that has also been used to supplement the effects of strong pain medications like morphine. The full effects (good and bad) of ketamine when used to control strong pain are not clear. More research is needed to support its use.

This study will specifically provide further information about;
· whether ketamine helps relieve pain when used together with other regular strong pain medication the possible side effects of ketamine when it is used to relieve pain
· any changes in the quality of life when people like yourself are prescribed ketamine for pain
· the total costs involved and any changes in health service utilisation when ketamine is prescribed for pain.

2. A randomised control trial of megestrol acetate, dexamethasone and placebo in the management of anorexia in patients with cancer

Anorexia, or the loss of appetite is a common problem in advanced cancer. It can be very distressing to those with a loss of appetite, and their family members and close friends. The treatment of this varies, and can include dietary changes, exercise, diet supplements and medical control of general symptoms. A number of medications have also been used to improve appetite.

This study will explore two specific medications called megestrol and dexamethasone. Megestrol has been used to treat breast cancer, its side effect of weight gain becoming a useful treatment for anorexia.  Dexamethasone is used for a variety of symptoms including improvement of appetite and weight gain.   Although both medications are used frequently, there have been few studies to determine their measured effect on appetite, and very little information about the cost and overall benefits.

This study will specifically provide further information about;
· whether either megestrol or dexamethasone improves appetite
· whether either megestrol or dexamethasone has any effect on weight gain, quality of life, or   ability to conduct daily affairs
· to compare the side effects of these two medications
· the usual care of this condition.

The outcome of this study may enable better management of loss of appetite with medicines that are shown to be effective and safe.

3. A randomised double blind placebo controlled trial of infusional subcutaneous octreotide in the management of malignant bowel obstruction in people with advanced cancer.

This study will explore a specific medication called octreotide. Octreotide has been in widespread use around the world for more than 15 years to treat a number of medical conditions. It works by reducing the work that your bowel does. Octreotide is one of a number of medicines that have been used to reduce the symptoms of a bowel obstruction when surgery is not possible or not wanted. The full effects (good and bad) of octreotide when used to manage the symptoms of bowel obstruction are not clear. Other medicines that have been found useful are ranitidine and dexamethasone, medications already in widespread use. More research is needed to understand how best to use it.

This study will specifically provide further information about;
· whether octreotide reduces vomiting
· whether octreotide can reduce pain caused by a bowel obstruction
· the other supports such as fluids that will help keep you comfortable
· the usual care of this condition.

The outcome of this study may enable better management of bowel obstruction with medicines that are shown to be effective and safe.  We are asking you at this point to consider this study, so that if you develop a bowel obstruction in the future, and your medical doctors assess that surgery is not an appropriate treatment, we will be able to start the study as quickly as possible.

4. Consumer health impact statements: a review of current practices

Investigators: Aoun S, McConigley R.  Currow D, Shelby-James T

Funding: Commonwealth Department of Health and Aging

Administering Institution: Flinders University

This discussion paper explored methods of describing consumers’ experiences of diseases and symptoms. In particular, it focused on the use of health impact statements to assist with description of specific diseases or symptoms. Possibilities for developing the use of impact statements to assist with the Pharmaceutical Benefits Advisory Committee (PBAC) drug recommendation process were explored.

A search of a literature in the areas of health, medicine and pharmacology was conducted.  Health related databases were searched for professional literature and key journals were hand searched. Grey literature was searched for reports or related documents. The websites of evidence based practice organisations were searched.  Personal communication with relevant organisations and government departments was undertaken in the form of email requests for information. Printed and Internet sources of popular literature were also examined for relevancy.

There are a number of effective ways of gathering information about the impact that a disease or symptom has. Research reports of studies about the experiences of people with the disease/symptom in question can be useful.  Both qualitative and quantitative research methods are useful for providing a complete picture.  The popular literature may also be useful, although it can be more difficult to find detailed information relating to specific areas and it is more difficult to verify the accuracy of information.

Health impact statements are widely used in the environmental health arena and are becoming more accepted in areas such as public health.  Health impact statements consider the input of people who are likely to be affected by a project, relevant experts and other appropriate sources of information.  The impact statement has five key parts: (1) screening; (2) scoping the problem; (3) assessment of health impacts; (4) decision making; (5) evaluation.  Few impact statements that related to a specific disease or symptom were found.  The Joint Epilepsy Council of Australia (2007) completed a brief report that describes the impact of living with epilepsy.  This report demonstrates the effectiveness of a concise statement to describe the effects of living with a disease.

Consumer participation in health care planning and policy making is considered desirable.  However, there is little evidence to guide the process of engaging consumers in the process.  There is also little evidence to suggest that methods of consumer involvement in healthcare that have been tried to date have been effective or useful.  To date, consumers have had little input into pharmaceutical policy making in Australia or elsewhere.  Several models of consumer participation in pharmaceutical decision making have been trialled but none have been fully evaluated.  Consumer representatives on committees, calling for public comment and consumer advisory boards are methods that are currently used in different settings. It is possible that the development of health impact statements may assist in increasing consumer input into decision making by increasing understanding of the issues facing consumers.

The findings of this paper suggest that there is an argument for adopting a more consumer focused approach to deliberating on medications suitable for use by people with life threatening illnesses.  However, there is no clearly articulated method of engaging consumers in the process.  Developing an   impact statement template suitable for use in this area would be a viable adjunct to the current PBAC submission process for medications that are aimed at a non-typical population.  As such it is recommended that: (1) a health impact assessment template is developed for use in this area; (2) the template is tested for validity; (3) a trial of the validated template is conducted.


Palliative care for people living at home: A Western Australian paediatric project. Phase 2.

Investigators:  Walker H, Platt V, Monterosso L, Phillips M.

Funding:  National Palliative Care Program ($200,000)

Administering Institution:  Cancer and Palliative Care Network

The purpose of this project is to develop a systematic approach to the provision and access to appropriate palliative care and respite for children with palliative care needs and their families in Western Australia (WA).  Currently there is no dedicated palliative care service in Western Australia for children and adolescents and no clear process for accessing timely respite provided by appropriately trained care providers.  To date this area of health care has been largely ignored, possibly due to its sensitive nature and due to difficulties in defining the boundaries and appropriate partnerships of an “ideal” model.

The study “Paediatric Palliative Care and Supportive Care: Caring for life: The needs of Children and families in Western Australia” conducted between 2003-2005, identified the lack of paediatric palliative care services in WA and the need for community based palliative care services for children in WA from the perspective of parents and service providers.  The key findings identified in that study were:

  • The concept of palliative care is poorly understood by parents and some health professionals.
  • Children with life-threatening and/or progressive illness prefer to remain at home for their care whenever possible.
  • Many families are significantly affected physically, emotionally, mentally and financially.
  • There is a need for a coordinated case management approach to palliative care.
  • There is a need to improve current levels of in-home and residential respite services.
  • Families require professional carers providing in-home and residential support to be skilled in the care of such children.
  • Parents require education about how to provide palliative and supportive care in the home, and practical assistance to do so.

“Palliative Care in WA.  Final Report December 2005” produced by the Palliative Care Advisory Group to the Director General of Health WA having reviewed palliative care services across the state.  This report also identified the specific needs for palliative care for children and made recommendations relating to service provision: coordination of care, equitable access, education of families and health professionals, care standards, and linkages between services and respite. In 2006 the WA Palliative Care Network Advisory Committee identified paediatric palliative as a priority area and established a Working Group of clinical expertise from areas that include neonatal care, oncology, chronic care, palliative care and consumers.  This group undertook a review of Australasian paediatric palliative care services which further confirmed that there is currently a gap in Paediatric Palliative Care services in WA as the only state in Australia not providing a specific paediatric palliative care service.

The current health reform process in Western Australia supports the process of exploring innovative models of care. This project is timely as it will provide the opportunity to research best practice models for palliative care, and for respite care, which are essential to management of children in their home setting.

Preparing family caregivers for palliative care support, discharge and care planning options.

Investigators: Hudson P, Trauer T, Lobb E, Oldham L, Kristjanson LJ, Quinn K, Summers M, Auret K.

Funding: NHMRC Palliative Care Research Grant ($219,810)

Administering Institution: University of Melbourne

While most people would prefer to die at home, the reality is that about two thirds of people die in in-patient settings, such as palliative care units. A home death is more likely if family caregivers are well prepared and supported in their role. Research shows, that many family caregivers lack the required information to effectively manage their role. They are also prone to suffer psychological distress while supporting their dying relative.
The aim of this project is to develop and evaluate an educational program offered to family caregivers who are supporting a relative who is receiving palliative care in an in-patient setting. The education program seeks to help family caregivers manage their role and to prepare them for the patient’s home care where appropriate. It is hoped that family caregivers who have attended the program will be more competent, better prepared and more informed about their caregiving role. An additional benefit from attending the program will be the opportunity for family caregivers to meet others in similar situations to themselves. Each education program will involve approximately six family caregivers; it will be conducted very soon after their relative has been admitted to the palliative care unit. The program will be of two hours duration (including time for data collection) and will be facilitated by a suitably qualified health professional. Written resources will be provided and caregivers will be given the opportunity to meet with staff from the multidisciplinary team.  Referrals for scheduled consultations will be made where relevant.
The program will be conducted in three sites (two in Victoria and one in WA) and will be comprehensively evaluated. The caregivers who attend the program will be invited to provide feedback by completing several questionnaires designed to determine the effectiveness of the program. Group education programs of this kind have previously not been rigorously developed and tested.  We seek to address this and hope to demonstrate that we can positively influence the family caregiving experience.

Promoting Assent: Developing an instrument to assess the needs and preferences of children with cancer.

Investigators: Alessandri AJ, Monterosso L, Kristjanson LJ, Sly P.

Funding: Princess Margaret Hospital for Children Foundation Project Grant ($8,118)

Administering Institution: Curtin University of Technology

The term "assent" was initially proposed to distinguish a child's agreement from a legally valid consent. Subsequently, assent has entered national and international guidelines as a regulated requirement in the research setting and an ethical responsibility in clinical care. In practice, however, children’s involvement in research participation and medical decision-making remains erratic and there is little research addressing the information needs and decision-making preferences of children in the health care setting.  Preliminary research by the principal investigator has identified several issues of major import to paediatric oncology patients (manuscript submitted).  These issues relate to the centrality of children in the provision of information, their preferred roles in decision-making, their perceptions of the type of decisions under consideration and the dynamic process of the decision-making interaction.  These results have been used to develop a questionnaire to assess 9 – 12 year old cancer patients' information needs and decision-making preferences.  The current proposal aims to test the validity and reliability of the questionnaire.  This will require a minimum of 100 children with cancer aged 9 to 12 years who are in a stable phase of treatment or have completed therapy less than 1 year ago.  Due to the numbers required, children will be recruited from PMH and other selected Australian centres.  Children will be asked to complete the questionnaire and results will be analysed using well accepted methods.  Once the questionnaire is validated, it can be used in large multi-centre studies to investigate children’s needs and preferences.  This will provide clinically relevant information concerning medical decision-making that may ultimately empower the child and their family in the healthcare setting.  The impact of this novel study will be far-reaching as the results will be relevant for both treatment and research decision-making and will be applicable to the entire paediatric community.

Radiation therapy information for breast cancer patients: Appropriate timing, sources and content.

Investigators: Halkett GKB
Supervisior:  Kristjanson L

Funding: National Breast Cancer Foundation Postdoctoral Research Fellowship (NBCF) 2006-2009 ($270,000)

Administering institution: Curtin University of Technology

Radiation therapy is routinely used in the management of cancer patients. It is recommended that 48 ± 6 per cent of all breast cancer patients should be considered for wide local excisions plus radiation therapy. However, in Australia the uptake of radiation therapy varies and some patients may also withdraw from treatment. Dr Halkett’s PhD showed that some breast cancer patients did not feel adequately informed about radiation therapy and felt that the timing of information provision could be improved to better meet their needs. The uptake of radiation therapy and patient satisfaction is therefore likely to be improved if patients are adequately informed about radiation therapy before they need to make treatment decisions.  Although previous studies have evaluated the effectiveness of information provision in radiation therapy, they have not adequately evaluated the timing of information provision. This study aims to (1) determine the information needs of breast cancer patients, (2) prioritise these information needs, preferred information sources and preferences for sequencing of different types of information, (3) develop an educational intervention that meets these information needs at different time periods during their radiation therapy experience, and (4) evaluate the impact of the intervention on patient outcomes using a randomised controlled trial. Phases (1) and (2) of the study are now complete and published internationally. Halkett and colleagues have identified the specific radiotherapy related information patients require from the time of presenting to their radiation oncologist until treatment completion. Her work has shown that patients’ information needs peak at the time of their planning appointment and again prior to treatment. Patients require information about planning and treatment procedures, their role in preparing for and carrying out these procedures, any discomfort or pain they should anticipate and any short or long term side effects. In order to reduce the significant psychological distress and potential for refusal of treatment, it is critical that a sustainable and effective intervention that meets these information needs is developed and tested. This year Dr Halkett is pilot testing a radiation therapist led educational intervention that is provided to patients prior to their planning appointment and prior to commencing treatment.