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Research Topic : Patient Preference
Scheme : NHMRC Project Grants
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  • Funded Activity

    What People With Aphasia Want: Towards Person-centred Goal-setting In Aphasia Rehabilitation

    Funder
    National Health and Medical Research Council
    Funding Amount
    $427,702.00
    Summary
    Consumers of health services expect their concerns and priorities to form part of their health care. People with aphasia have difficulty communicating their needs and speech pathologists are challenged to plan therapy to meet aphasic clients' needs. Family members of people with aphasia also have unrecognised concerns. The first aim of this study is to determine the goals of people with aphasia and their families and to gain their perspective of whether these goals were addressed in speech thera .... Consumers of health services expect their concerns and priorities to form part of their health care. People with aphasia have difficulty communicating their needs and speech pathologists are challenged to plan therapy to meet aphasic clients' needs. Family members of people with aphasia also have unrecognised concerns. The first aim of this study is to determine the goals of people with aphasia and their families and to gain their perspective of whether these goals were addressed in speech therapy. The study will then seek the perspective of their treating speech pathologists about the goals of therapy and the challenges that speech pathologists face in practising person-centered goal setting. This study will not only provide a framework for aphasia services in Australia but also provide data that will inform professional educational programs about person-centered practice for speech pathologists and other health professionals. It will also contribute to current theories on collaborative goal setting in a rehabilitation context.
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    Funded Activity

    Patient Preferences For Adjuvant Chemotherapy In Early Breast Cancer: What Makes It Worthwhile?

    Funder
    National Health and Medical Research Council
    Funding Amount
    $69,420.00
    Summary
    Adjuvant chemotherapy, used in addition to surgery and radiation, improves recurrence and survival rates in women with early breast cancer. These gains must be balanced against the side effects and inconvenience of chemotherapy including hair loss, nausea, tiredness and risk of infection. This study will determine the gains considered necessary to make modern adjuvant chemotherapy for early breast cancer worthwhile by asking women who have had such treatment. It will determine factors that might .... Adjuvant chemotherapy, used in addition to surgery and radiation, improves recurrence and survival rates in women with early breast cancer. These gains must be balanced against the side effects and inconvenience of chemotherapy including hair loss, nausea, tiredness and risk of infection. This study will determine the gains considered necessary to make modern adjuvant chemotherapy for early breast cancer worthwhile by asking women who have had such treatment. It will determine factors that might influence the gain considered necessary, such as the kind of treatment, the severity of the side effects experienced, social and other factors. Three hundred women who have had modern adjuvant chemotherapy in an ongoing international clinical trial will be recruited and interviewed. The interviews are standardised, scripted and administered by trained researchers to avoid influencing the subjects. Diagrams and props are used to make the questions clearer. Evaluation of these aids is an additional aspect of the project. This information will be invaluable for women and clinicians considering this potentially curative treatment over the next 15 years. The study will also provide new knowledge on how best to provide information about the benefits of treatment. This can then be applied to discussions about treatment in routine clinical practice. The methods are suitable for a wide range of questions in other diseases and settings. The project will be extended to develop the materials for other questions in breast cancer and other settings.
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    Funded Activity

    Planned Vaginal Birth Or Planned Elective Repeat Caesarean For Women At Term With A Single Previous Caesarean Section

    Funder
    National Health and Medical Research Council
    Funding Amount
    $741,750.00
    Summary
    In Australia over 1 in 5 women give birth by caesarean section. The largest contribution to the total number of caesareans is from women having a repeat caesarean; who have previously had a caesarean. Two care policies are standard for women who have had a previous caesarean; either a planned trial of vaginal birth or a planned elective repeat caesarean. This prospective cohort study will compare the risks and benefits of these two forms of care. The results will help provide better evidence fro .... In Australia over 1 in 5 women give birth by caesarean section. The largest contribution to the total number of caesareans is from women having a repeat caesarean; who have previously had a caesarean. Two care policies are standard for women who have had a previous caesarean; either a planned trial of vaginal birth or a planned elective repeat caesarean. This prospective cohort study will compare the risks and benefits of these two forms of care. The results will help provide better evidence from which to develop health advice that will guide clinical practice, for the optimal care of women who have had a previous caesarean and their infants.
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    Funded Activity

    Empirical Ethics: Quantification Of Social Preferences For Economic Evaluation In The Health Sector

    Funder
    National Health and Medical Research Council
    Funding Amount
    $329,450.00
    Summary
    Recent studies indicate that there are significant differences between the social 'preferences'-priorities of the population and the priorities implied by health policy and embodied in health economic evaluations of the health sector. For example, members of the public give higher priority to the severely ill even when little can be done for them. The studies suggest that the public would also take into account, inter alia, a number of other factors, including prognosis, health potential and the .... Recent studies indicate that there are significant differences between the social 'preferences'-priorities of the population and the priorities implied by health policy and embodied in health economic evaluations of the health sector. For example, members of the public give higher priority to the severely ill even when little can be done for them. The studies suggest that the public would also take into account, inter alia, a number of other factors, including prognosis, health potential and the social context of the problem. They would not treat program costs in the way economic theory and practice recommends. These issues have been dramatised in the WHO's Evaluation of Health Systems (World Health Report 2000). This assigns a weight of only 0.25 to health improvement and 0.75 to issues of fairness. The proposed study will carry out three tasks. The first is to measure the importance of Australian health-related social preferences which should, potentially, be included in economic evaluation studies. Key values - parameters - including the rate of time preference and the social willingness to pay for an additional year of life will be measured precisely for immediate use. Secondly, the importance of other issues including illness severity, adaptation and prognosis will be tested to determine how these factors should be included in the economic evaluation of health programs. Finally, some general issues related to public versus private funding, egalitarianism and choice will be investigated. Results from interviews and surveys will be integrated in the Assessment of Quality of Life (AQoL) instrument and its user manual.
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    Funded Activity

    Consumer Information Materials And A Communication Aid For Diagnostic Tests For Breast Disease

    Funder
    National Health and Medical Research Council
    Funding Amount
    $105,863.00
    Summary
    Many studies have now shown that the majority of patients want to participate in clinical decisions about medical treatments they might receive. As a result, information materials are being developed to help consumers and doctors work together to reach satisfying treatment decisions which are based on the best available evidence and also reflect the individual patient's needs and preferences about the treatment options. Very little is known, however, about whether consumers also want to particip .... Many studies have now shown that the majority of patients want to participate in clinical decisions about medical treatments they might receive. As a result, information materials are being developed to help consumers and doctors work together to reach satisfying treatment decisions which are based on the best available evidence and also reflect the individual patient's needs and preferences about the treatment options. Very little is known, however, about whether consumers also want to participate in decisions about whether to have a medical test. Tests can be trivial, such as a blood or urine test, or quite major and invasive, such as a biopsy or a colonoscopy. People considering a medical test might want to know the answers to the following questions: What is my chance of having the disease being tested for? If the test result is positive what is the chance I have the disease? If the test result is negative what is the chance I have the disease anyway? How will the test result influence treatment of my condition? What are possible side-effects of the test? Generally information materials about medical tests only describe the test itself, and do not contain the information people need to answer these questions. Even doctors may not have to hand the data needed to answer these questions. Yet without this information, consumers cannot make truly informed and rational choices about whether to have the test. This project aims to find out whether consumers want to participate in decisions about medical tests, what information they would want to do this, and to develop and trial information materials and a communication aid for a small number of breast cancer tests. We will use tests for diagnosing breast cancer as our model but we anticipate the work will be applicable across a wide range of medical tests.
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    Funded Activity

    Improving QOL At The End Of Life: A Randomised Controlled Trial Of A Doctor-nurse-patient Intervention.

    Funder
    National Health and Medical Research Council
    Funding Amount
    $687,655.00
    Summary
    This project aims to promote mutual understanding between patients with incurable disease, carers and clinicians about prognosis, end of life issues and treatment goals in order to improve the quality of remaining life. Currently many patients do not understand their prognosis and make poor decisions about treatment, receiving costly, futile and invasive treatments just days before death. This project will empower patients and doctors to better discuss these issues.
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    Funded Activity

    Can Self-management Education Programs Improve Outcomes Of People With Osteoarthritis?

    Funder
    National Health and Medical Research Council
    Funding Amount
    $343,874.00
    Summary
    Arthritis is a very common disease associated with pain, disability and poor quality of life. An important way that people with arthritis can deal with the disease is through using a variety of self-management behaviours and coping strategies as well as becoming well informed about the best available treatments. A specific course was developed in he US to help people self-manage. It has been available in Australia for 20 years through Arthritis Foundations and has become their core business. Tre .... Arthritis is a very common disease associated with pain, disability and poor quality of life. An important way that people with arthritis can deal with the disease is through using a variety of self-management behaviours and coping strategies as well as becoming well informed about the best available treatments. A specific course was developed in he US to help people self-manage. It has been available in Australia for 20 years through Arthritis Foundations and has become their core business. Treatment guidelines used by doctors to treat people with arthritis regularly recommend that patients should be referred to such courses. Although the course is widely distributed, the evidence scientific evidence regarding its effectiveness is patchy, and some overviews suggest it is not useful at all. Confusion exists regarding the value of the course. While treatment guidelines advise doctors to refer patients to the program by very few GPs, Rheumatologist or Orthopaedic surgeons do refer. The proposed study is a large controlled trial which will provide essential evidence to inform patients, doctors and policy makers on the benefits of the course. It will involve people with well defined moderate to severe arthritis who have consulted a surgeon or rheumatologist. People will be randomised to receive the intervention (two hours per week, six session course including an 'arthritis self-help' book) will be compared with people in a control group (who only receive the book without instruction). People will be followed for 1 year to see if the course improves quality of life, health behaviours, and whether less health care resources (ie attendance at doctors or less medication use) are used. The results of this study will be influential in determining government policy as the number of people with chronic diseases like arthritis is rapidly growing and the acute healthcare system, including hospitals, are poorly equipped to deal with this growing problem.
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    Funded Activity

    Evaluation Of A Patient Education Program For Improving Cancer Pain Management

    Funder
    National Health and Medical Research Council
    Funding Amount
    $123,600.00
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    Funded Activity

    Preparing Patients For A Potentially Threatening Invest Ingation: A Comparison Of Strategies

    Funder
    National Health and Medical Research Council
    Funding Amount
    $51,883.00
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    Funded Activity

    Euthanasia: The Perceptions Of Patients With Cancer And Their Providers

    Funder
    National Health and Medical Research Council
    Funding Amount
    $135,309.00
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