Needs Based Access To Specialist Palliative Care Services: Development And Evaluation Of A Consumer Toolkit
Funder
National Health and Medical Research Council
Funding Amount
$286,572.00
Summary
The study will test the cost-effectiveness of two models of supportive care coordination for advanced cancer against _usual care�: a Telephone Caseworker model and an Oncologist-GP model. Both models are aimed at improving patients� and their informal caregivers� health and psychosocial status; are patient-centred, evidence based and readily transferable across health care settings. The Telephone Caseworker model has the additional advantage of reaching people isolated through geography, physica ....The study will test the cost-effectiveness of two models of supportive care coordination for advanced cancer against _usual care�: a Telephone Caseworker model and an Oncologist-GP model. Both models are aimed at improving patients� and their informal caregivers� health and psychosocial status; are patient-centred, evidence based and readily transferable across health care settings. The Telephone Caseworker model has the additional advantage of reaching people isolated through geography, physical disability or age.Read moreRead less
Assessment Of The Effectiveness Of Australian Models Of Palliative Care Delivery In Four Neurodegenerative Disorders
Funder
National Health and Medical Research Council
Funding Amount
$150,000.00
Summary
This study will be conducted in three Australian states (Queensland, Victoria and West Australia), to assess the effectiveness of existing palliative care service delivery to people with motor neurone disease, multiple sclerosis, Huntington’s disease or Parkinson’s disease, and to their families. In phase I, interviews will be conducted with people who have these diseases, their families, and health professionals to discover the needs for palliative care services. In phase II, a survey will dete ....This study will be conducted in three Australian states (Queensland, Victoria and West Australia), to assess the effectiveness of existing palliative care service delivery to people with motor neurone disease, multiple sclerosis, Huntington’s disease or Parkinson’s disease, and to their families. In phase I, interviews will be conducted with people who have these diseases, their families, and health professionals to discover the needs for palliative care services. In phase II, a survey will determine the extent to which these needs are met. The findings will be used to recommend improved palliative care delivery models.Read moreRead less
Examining A Core Assumption Of Policy And Services For Older Indigenous Australians
Funder
National Health and Medical Research Council
Funding Amount
$133,387.00
Summary
In aged care service planning, the age 50 years or over is used for the Indigenous Australian population in the same way as the age 70 years is used for the non-Indigenous population. This is based on the lower life expectancy of the Indigenous population which is presumed to result in a need for aged care services at younger ages. The underlying assumption is that Australia's Indigenous population aged over 50 has the same set of age-associated conditions and care needs as the non-Indigenous po ....In aged care service planning, the age 50 years or over is used for the Indigenous Australian population in the same way as the age 70 years is used for the non-Indigenous population. This is based on the lower life expectancy of the Indigenous population which is presumed to result in a need for aged care services at younger ages. The underlying assumption is that Australia's Indigenous population aged over 50 has the same set of age-associated conditions and care needs as the non-Indigenous population aged over 70. The evidence for this assumption is not established. It is well documented that the Indigenous population has worse health outcomes across all age groups relative to non-Indigenous Australians. However, our understanding of the details of the observed pattern is far from complete. This project seeks to compare the health status of the Indigenous population aged 50 years or over to the health status of the non-Indigenous population aged 70 years or over. The project will analyse a number of data sets to inform future directions in policy and service provision. A better understanding of these issues is fundamental to informed planning and allocation of resources, to identification of areas amenable to prevention strategies and to the development of approaches to care that meet the needs of Indigenous people.Read moreRead less
A RCT Of An Innocative Supportive Care Program Designed To Reduce Perceived Needs & Psychological Distress & Enhance
Funder
National Health and Medical Research Council
Funding Amount
$111,043.00
Summary
The diagnosis of incurable lung cancer is a very distressing event, and patients have a high level of psychological and informational needs. An innovative evidence-based program has been designed to address these unmet needs in an emotionally supportive environment at this critical time. This study tests whether the program meets the needs of these people, reduces their psychological distress and enhances their quality of life. If successful, it will be integrated into the standard care to impro ....The diagnosis of incurable lung cancer is a very distressing event, and patients have a high level of psychological and informational needs. An innovative evidence-based program has been designed to address these unmet needs in an emotionally supportive environment at this critical time. This study tests whether the program meets the needs of these people, reduces their psychological distress and enhances their quality of life. If successful, it will be integrated into the standard care to improve the experience of this large and under-supported group.Read moreRead less
A Model Of Current & Potential Palliative Care Constituency: Measuring Met & Unmet Needs
Funder
National Health and Medical Research Council
Funding Amount
$145,210.00
Summary
Although many health care providers believe palliative care should be offered to all Australians who need it, there is no population-based data to support this claim. This study will provide much needed population-based evidence by measuring the levels of met and unmet needs of people with active, progressive, advanced disease in the last 12 months of their lives. A model of current and potential palliative care constituency will be developed that will lead to improved access to palliative care ....Although many health care providers believe palliative care should be offered to all Australians who need it, there is no population-based data to support this claim. This study will provide much needed population-based evidence by measuring the levels of met and unmet needs of people with active, progressive, advanced disease in the last 12 months of their lives. A model of current and potential palliative care constituency will be developed that will lead to improved access to palliative care for people who do not traditionally access specialist palliative care services.Read moreRead less
Genome-wide Combined Linkage-association Scan Of Multiply Phenotyped Twin Sibships
Funder
National Health and Medical Research Council
Funding Amount
$1,920,000.00
Summary
We have a large ongoing study of adolescent twins, their siblings and parents who are multiply phenotyped in many domains including melanoma risk factors, serum biochemistry, and cognition. We used our first Medical Genomics grant to obtain a 5cM linkage scan for>500 families and have identified linkage peaks for many different phenotypes. To fine map these it will be most efficient to carry out a genome-wide association scan. We request funds to type a 500k SNP chip on 1000 individuals.
Discussing Prognosis & End-of-life Issues In Palliative Care: Current Practice & Dvlpmnt Of Evidence Based Trng Program
Funder
National Health and Medical Research Council
Funding Amount
$149,955.00
Summary
Discussing prognosis and end-of-life issues is of key importance to palliative care patients and their families. We will a) prepare evidence based communication guidelines on these topics, b) analyse audio-taped consultations to see how these issues are currently discussed and c) develop and pilot a communication training module for palliative care clinicians. This could improve clinical practice, enhance patients' and families' psychological well-being and help patients to make appropriate deci ....Discussing prognosis and end-of-life issues is of key importance to palliative care patients and their families. We will a) prepare evidence based communication guidelines on these topics, b) analyse audio-taped consultations to see how these issues are currently discussed and c) develop and pilot a communication training module for palliative care clinicians. This could improve clinical practice, enhance patients' and families' psychological well-being and help patients to make appropriate decisions and prepare for their death.Read moreRead less
Case Conferencing, Quality Of Life And Palliative Care For Clients From Remote Communities In The Northern Territory
Funder
National Health and Medical Research Council
Funding Amount
$42,750.00
Summary
This project addresses an area in the delivery of palliative care in rural and remote Top End of the NT, where research is seriously lacking. It will focus on the relationship between quality of life and communication between health providers and palliative clients and their carers. The conduit of communication will be case conferences and family conferences. There has been some research that reflects that case conferencing (in urban areas) in palliative care leads to improved quality of life (M ....This project addresses an area in the delivery of palliative care in rural and remote Top End of the NT, where research is seriously lacking. It will focus on the relationship between quality of life and communication between health providers and palliative clients and their carers. The conduit of communication will be case conferences and family conferences. There has been some research that reflects that case conferencing (in urban areas) in palliative care leads to improved quality of life (Mitchell 2006). This project will be assessing whether there is a similar association between quality of life and case conferencing in rural and remote Northern Territory. The project will also assess the dynamics of communication between palliative clients and their carers and the health providers.Read moreRead less
Palliative Care For Aboriginal And Torres Strait Islander People With End-stage Renal Disease: An Action Research Initiati
Funder
National Health and Medical Research Council
Funding Amount
$295,554.00
Summary
There are significant gaps in current knowledge for providing culturally appropriate and effective palliative care for Aboriginal and Torres Strait Islander people with kidney failure. This project will consider these issues in partnership with the Kowanyama Community and the associated key Aboriginal and Torres Strait Islander and other agencies. Echoing the recommendations by the �National Indigenous Palliative Care Needs Study� this study will address the absence of a culturally appropriate m ....There are significant gaps in current knowledge for providing culturally appropriate and effective palliative care for Aboriginal and Torres Strait Islander people with kidney failure. This project will consider these issues in partnership with the Kowanyama Community and the associated key Aboriginal and Torres Strait Islander and other agencies. Echoing the recommendations by the �National Indigenous Palliative Care Needs Study� this study will address the absence of a culturally appropriate model of care pathway for Aboriginal and Torres Strait Islander people with advanced kidney failure to make effective informed choices for palliative care. Through the use of action research methodology this study will engage with Aboriginal and Torres Strait Islander people to consider these issues, taking into consideration their cultural, spiritual and social needs, those of their family, carers, healthcare personnel and the wider community. Subject to discussions and input from the Aboriginal and Torres Strait Islander people and other key stakeholders it is anticipated that the key areas of interest will focus on spirituality, quality of life, role of the family, carer and community, understandings and experience of kidney failure, treatment options, patient advocacy systems, the need for relocation, and the potential role of advanced care planning. Intervention strategies will also be conducted and evaluated. Subject to discussions and input from the Aboriginal and Torres Strait Islander participants and other key stakeholders it is anticipated that these will focus on a community based education program, development of a culturally appropriate quality of life questionnaire, development and piloting of a culturally appropriate mechanism for people to consider advanced care planning and development and piloting of a patient advocacy process for those from remote areas visiting metropolitan renal - palliative care health services.Read moreRead less