Development Of A Health-related Quality Of Life Instrument For Children With Cerebral Palsy
Funder
National Health and Medical Research Council
Funding Amount
$114,000.00
Summary
This project aims to develop and test a measure of quality of life for children with cerebral palsy (CP). This is a new project of international significance that has been recommended as the highest research priority of the United Cerebral Palsy Association with the strong support of CP researchers and clinicians internationally. CP remains the most common cause of physical disability in childhood, with an incidence of 2-2.0-2.5 per 1,000 live births. Described as a 'non-progressive motor impair ....This project aims to develop and test a measure of quality of life for children with cerebral palsy (CP). This is a new project of international significance that has been recommended as the highest research priority of the United Cerebral Palsy Association with the strong support of CP researchers and clinicians internationally. CP remains the most common cause of physical disability in childhood, with an incidence of 2-2.0-2.5 per 1,000 live births. Described as a 'non-progressive motor impairment of central origin recognised in infancy or childhood', CP presents as a static lesion on the brain characterised by progressive muscoskeletal deformity. Its impact on children and families is profound, resulting in extensive and life-long burden of care for families, and significant limitations to children's development and wellbeing. The management of the neuromuscular sequelae and health problems is a considerable cost to the health system because children require frequent visits for medical management, surgical procedures and rehabilitation. Trials of CP management effectiveness are hampered by the absence of patient outcome measures. Whilst new treatment options aim to provide substantial improvements in impairment and functioning they have disadvantages. For example, spasticity management includes Botulinum toxin A and intrathecal baclofen, both may improve function but are costly and invasive; treatments for ambulation (multi-level orthopaedic surgery) offer improved gait and mobility but require extensive rehabilitation; treatments for severe eating difficulties and poor growth (gastrostomy) may improve survival but result in aggravation of gastro-oesophageal reflux; and surgery for intractable epilepsy may improve seizure disorder but result in functional deficits. Quality of life is now a mandatory component of clinical trial research; valid and reliable tools sensitive to detecting change are urgently required.Read moreRead less
A Randomised Control Trial Of Non-specific Clinical Management Versus CBT In Chronic Anorexia Nervosa
Funder
National Health and Medical Research Council
Funding Amount
$555,843.00
Summary
Anorexia nervosa (AN) is a serious mental illness that usually starts in adolescence and often runs a chronic course. With an estimated prevalence rate between 0.5% and 3.7% of women, and up to 50% remaining chronically ill, the illness poses a disproportionate burden on health and social services. AN has inpatient costs alone that exceed that for schizophrenia. Chronic AN has the highest mortality rate of any mental illness. Chronic AN patients are known for their ambivalence about engaging in ....Anorexia nervosa (AN) is a serious mental illness that usually starts in adolescence and often runs a chronic course. With an estimated prevalence rate between 0.5% and 3.7% of women, and up to 50% remaining chronically ill, the illness poses a disproportionate burden on health and social services. AN has inpatient costs alone that exceed that for schizophrenia. Chronic AN has the highest mortality rate of any mental illness. Chronic AN patients are known for their ambivalence about engaging in treatment and poor motivation to change their eating disorder behaviours. They often fail to respond to traditional treatments and develop a history of negative treatment experiences and repeated treatment failures. A new approach is needed to reduce both the personal suffering and the burden of the illness on social and medical services. To date, there has been little scientific investigation into the development of specific treatment for those patients with chronic AN. This study will trial a recently manualised therapy - non-specific supportive clinical management - which initial evidence suggests may hold promise for chronic AN because it offers a more indirect, motivationally-matched approach. This treatment will be compared to the establishment therapy Cognitive Behavioural Therapy. Patients will be randomly allocated to one of the two treatment conditions and will receive 40 sessions over 12 months. They will be thoroughly assessed prior to during and after they have completed treatment and followed up for 6 months. This is the worlds first trial of a psychological treatment for chronic AN; it is hoped the study will establish an effective treatment for this debilitating and expensive illness. Further, as the project aims to explore the core, but often over-looked, feature of AN - poor motivation for recovery - it will also be in a position to shed light on the deep psychological processes that maintain this illness.Read moreRead less
Efficacy And Safety Of Vertebroplasty For Treatment Of Painful Osteoporotic Spinal Fractures: A Randomised Trial
Funder
National Health and Medical Research Council
Funding Amount
$586,250.00
Summary
Painful spinal or vertebral fractures are a substantial and growing public health problem and are a burden on the health care system. In Australia, 20-25% of women and 15-20% of men over the age of 50 will develop one or more fractures of their spine in their lifetime. Up to a half of these fractures will result in severe pain and disability. While the fractures generally heal within weeks or a few months, some are so painful that they require narcotic pain control, hospitalisation, and-or long- ....Painful spinal or vertebral fractures are a substantial and growing public health problem and are a burden on the health care system. In Australia, 20-25% of women and 15-20% of men over the age of 50 will develop one or more fractures of their spine in their lifetime. Up to a half of these fractures will result in severe pain and disability. While the fractures generally heal within weeks or a few months, some are so painful that they require narcotic pain control, hospitalisation, and-or long-term nursing home care. Other problems include chronic pain, spinal deformities, loss of height and mobility and restricted breathing. Vertebroplasty is a new procedure consisting of injection of a type of 'bone cement' into the vertebrae to mend the break. It is an exciting treatment because for some people, this results in an immediate and sustained improvement in pain. Although rare, complications such as rib fracture, cement leakage and fractures in other vertebrae do occur. One particular concern is that the mechanical changes to the spine caused by the bone cement may cause long-term complications such as an increased risk of future fractures of treated or adjacent vertebrae. So far, there is very little evidence of the efficacy and safety of this new technology. Importantly, it has not been compared with usual medical care for fractures. In medical research it can be difficult to properly evaluate an exciting and 'apparently' effective treatment that doctors and patients demand. The main aim of this project is to determine whether vertebroplasty is an effective and safe treatment compared to usual medical care. We have a unique opportunity to evaluate vertebroplasty through a strong collaborative effort between the 3 centres currently offering this procedure in Melbourne. If vertebroplasty can be demonstrated to be an effective, safe and cost-effective treatment for painful osteoporotic spinal fractures this will be a valuable addition to current treatment options.Read moreRead less
This Study aims to answer the question: When is the best time for adults with kidney disease to start dialysis? This question is currently a subject of intense international debate. It has been suggested that patients who commence dialysis relatively early, when they still have a high level of remaining kidney function, have fewer complications, maintain a better level of function in the community and are less likely to die as a result of their kidney disease. However, this has not been determin ....This Study aims to answer the question: When is the best time for adults with kidney disease to start dialysis? This question is currently a subject of intense international debate. It has been suggested that patients who commence dialysis relatively early, when they still have a high level of remaining kidney function, have fewer complications, maintain a better level of function in the community and are less likely to die as a result of their kidney disease. However, this has not been determined in a rigorous scientific manner. In fact starting dialysis earlier may expose the person to the risks associated with the use of dialysis and may also impact on their quality of life. Many international kidney societies have formulated guidelines recommending that dialysis should be commenced early - when the remaining kidney function drops to a level of approximately 10-15% of normal kidney function. Recent practice in Australia and New Zealand has been to commence dialysis when the remaining kidney function is between 6 and 9% of normal. Hence, the adoption of these guidelines recommending an earlier dialysis start time will have a significant impact on health costs; therefore a net benefit to the patient and the community, needs to be demonstrated. To answer this important question, we have designed and instituted a multi-center trial, that was commenced in 2000. The trial has been scientifically designed (randomised controlled trial) to compare the effect of early start dialysis (remaining kidney function between 10-14%) versus late start dialysis (remaining kidney function between 5-7%) on survival, disease and dialysis complications and subsequent hospitalization. To date 748 of the required 800 patients have been entered into the trial and will be followed for a minimum of 3 years. We are confident the results of this trial will impact at a local, national and international level, delineating best practice management of dialysis in people with kidney failure.Read moreRead less
A Randomised Control Trial Of Treatments For Children With Different Types Of Reading Difficulty
Funder
National Health and Medical Research Council
Funding Amount
$752,319.00
Summary
This randomise control trial will test treatments for children with different types of reading difficulty. The outcomes will reveal how struggling readers should be supported in classrooms and by the Reading Assistance Voucher programme. This will reduce the number of struggling readers who attempt suicide, drop out of school, or abuse drugs to try and escape their sense of failure. This will suport the Government's efforts to ensure that Australians have A Healthy Start to Life.
Improving Functional Capacity In Patients With Chronic Lung Disease With High Intensity Respiratory Muscle Training
Funder
National Health and Medical Research Council
Funding Amount
$340,880.00
Summary
Patients with chronic respiratory disease have limited exercise capacity, which severely impairs their quality of life. The mechanisms responsible for this impairment may relate to their lung disease, or to the long-term effects that inactivity has on the cardiovascular and musculoskeletal systems. Pulmonary rehabilitation programs involving whole-body exercise are now widely used as an addition to standard medical therapy as a way of decreasing symptoms and optimising function. While these gene ....Patients with chronic respiratory disease have limited exercise capacity, which severely impairs their quality of life. The mechanisms responsible for this impairment may relate to their lung disease, or to the long-term effects that inactivity has on the cardiovascular and musculoskeletal systems. Pulmonary rehabilitation programs involving whole-body exercise are now widely used as an addition to standard medical therapy as a way of decreasing symptoms and optimising function. While these generalised, broad-based programs result in modest improvements in peripheral muscle function, cardiovascular function, functional exercise capacity and quality of life, it is now apparent they have little or no effect on respiratory muscle function, which is also greatly impaired in COPD. The aims of this study are to answer two longstanding questions that are fundamental to rehabilitation programs in patients with COPD (i) does a program of specific respiratory muscle training alone improve whole-body exercise capacity, dyspnoea, and-or quality of life? and (ii) does the addition of a program of specific respiratory muscle training to a standard whole-body exercise rehabilitation program result in improvemed exercise capacity, dyspnoea and-or quality of life to a greater degree than a program of whole-body exercise training alone? The study is of importance to patients with COPD by investigating the mechanisms underlying the improvement in exercise capacity following a rehabilitation program and the role of respiratory muscle training in such a program. By more accurately defining the mechanisms of exercise limitation we may be able to maximise the benefits obtained during a rehabilitation program, including improved work capacity, reduction in the degree of breathlessness and improved quality of life.Read moreRead less
Adverse Outcomes Following Cataract Surgery In Western Australia: A Population Study Using Record Linkage
Funder
National Health and Medical Research Council
Funding Amount
$359,150.00
Summary
Cataract is a major cause of correctable visual loss with surgery the only treatment available. Cataract surgery is now one of the most commonly performed operations. With the ageing population, the number of operations is set to double within the next 12 years in Western Australia, from 10,000 procedures a year currently. Although surgery is successful in most cases, complications do occur. Endophthalmitis (infection of internal structures of the eye), incomplete cataract removal, detachment of ....Cataract is a major cause of correctable visual loss with surgery the only treatment available. Cataract surgery is now one of the most commonly performed operations. With the ageing population, the number of operations is set to double within the next 12 years in Western Australia, from 10,000 procedures a year currently. Although surgery is successful in most cases, complications do occur. Endophthalmitis (infection of internal structures of the eye), incomplete cataract removal, detachment of the retina and corneal decompensation (opacity of the clear front of the eye) are four major complications of cataract surgery. These complications may cause blindness and are expensive to treat. We propose to investigate these serious, potentially blinding, complications of cataract surgery by measuring how often these complications occur and to examine if changes in surgical technique over the past 20 years have resulted in better outcomes. We will also evaluate risk factors for endophthalmitis; and determine the quality of life and economic costs of endophthalmitis after cataract surgery. Our study findings will enable us to better inform eye surgeons, the general community, health policy makers and the scientific community about the cost versus safety of different forms of cataract surgery. Unless effective strategies can be found to reduce the rate of complications, the personal and community burden of these devastating complications will only increase as the number of operations continues to increase.Read moreRead less
Sydney Multisite Intervention Of LaughterBosses And ElderClowns (SMILE): An RCT Of Humour Therapy In Residential Care
Funder
National Health and Medical Research Council
Funding Amount
$852,237.00
Summary
Sydney Multisite Intervention of LaughterBosses and ElderClowns (SMILE) is a trial of humour therapy. About 400 residents from 36 hostels and nursing homes will be randomly assigned to receive the SMILE treatment or usual care. ElderClowns will visit weekly, and staff volunteers will be trained to be LaughterBosses and bring humour to daily care routines. SMILE will evaluate whether humour therapy improves resident quality-of-life and mood, and reduces staff burnout and turnover.