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A pilot study of caregiver intervention and support for carers of people with brain tumours
High grade glioma (HGG) is a term used to encompass grade III anaplastic astrocytomas, oligodendrogliomas and glioblastoma multiforme. This is a rapidly terminal, progressive, and significantly debilitating group of diseases which robs patients of function, cognition, and personality, making this a highly distressing disease for patients, families and carers. In addition to the general cancer related caregiving issues, the impact of the disease on the patients’ ability to function leads to reduced quality of life, increased stress and carer burden for their caregiver . The diagnosis of a brain tumour is particularly stressful for carers because the prognosis is dire and life expectancy short. These carers report increased stress and distress levels and decreased quality of life compared to carers of patients with cancers with a good prognosis. There are more than 200 problems and burdens identified by caregivers, which fall under several categories including: physical health problems, social problems and information needs, emotional problems and burdens related to responsibilities and impact on daily life. Psychosocial interventions for caregivers in a range of situations have been developed with various aims including improving caregiver understanding and ability to care, self-efficacy, quality of life, stress reduction, and improving communication and relationships in the family. There is a paucity of information regarding the role or effect of interventions addressing the unmet needs of caregivers of patients with HGG. Thus far this group has carried out two investigations into the experience and needs of patients with HGG and their caregivers. The first was a qualitative study of the needs of patients with HGG and their caregivers. Caregivers described a time of rapid change and a steep learning curve where they struggled with caring for partners with major disabilities and not knowing where to seek additional support or assistance (Halkett et al. 2010; McConigley et al. 2010). The second was a quantitative study (SCGH HREC 2006-146) which examined the experiences of 100 patient-carer dyads at three time points during the disease trajectory: during combined chemoradiotherapy, and 3 and 6 months later. 31% of caregivers reported moderate distress (DT score 5-6) and 31% reported extreme distress (score 7-10). Caregivers also reported significantly more distress than patients (mean 5.1 vs. 4.1; paired t test p=0.01). Caregiver distress was associated with higher scores on the general health questionnaire (r=0.61, p<0.001). The top 5 moderate/high caregiver unmet needs were: 1. accessing prognostic information; 2. accessing financial support and government benefits; 3. accessible hospital parking; 4. impact of caring on usual life; and 5. reducing stress in the patients’ life. These preliminary results will be presented in a poster at COSA in November 2012. The development of our intervention is based on our preliminary data and the identification of several key components including the caregiver’s preparedness to care, sense of control, competence, self-efficacy, anxiety, depression and distress, social support, information, a sense of reward, meaningfulness, positive emotions, optimism, respite and relationship with the care-receiver. Our intervention is currently in the development phase and is aimed to cover all these areas. We are seeking support and advice regarding the development of the intervention from a variety of sources including medical oncologists, neurosurgeons, radiation oncologists, palliative care physicians, psychologists, social workers, nurses, experienced representatives from Carers WA and COGNO, as well as consumer representatives. The purpose of this project is to determine the feasibility and efficacy of this supportive-educational intervention for caregivers of patients with HGG.
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Caregiver Intervention and Support for carers of people with brain tumours.
High grade glioma (HGG) is a term used to encompass grade III anaplastic astrocytomas, oligodendrogliomas and glioblastoma multiforme. This is a rapidly terminal, progressive, and significantly debilitating group of diseases which robs patients of function, cognition, and personality, making this a highly distressing disease for patients, families and carers. In addition to the general cancer related caregiving issues, the impact of the disease on the patients’ ability to function leads to reduced quality of life, increased stress and carer burden for their caregiver . The diagnosis of a brain tumour is particularly stressful for carers because the prognosis is dire and life expectancy short. These carers report increased stress and distress levels and decreased quality of life compared to carers of patients with cancers with a good prognosis. There are more than 200 problems and burdens identified by caregivers, which fall under several categories including: physical health problems, social problems and information needs, emotional problems and burdens related to responsibilities and impact on daily life. Psychosocial interventions for caregivers in a range of situations have been developed with various aims including improving caregiver understanding and ability to care, self-efficacy, quality of life, stress reduction, and improving communication and relationships in the family. There is a paucity of information regarding the role or effect of interventions addressing the unmet needs of caregivers of patients with HGG. Thus far this group has carried out two investigations into the experience and needs of patients with HGG and their caregivers. The first was a qualitative study of the needs of patients with HGG and their caregivers. Caregivers described a time of rapid change and a steep learning curve where they struggled with caring for partners with major disabilities and not knowing where to seek additional support or assistance (Halkett et al. 2010; McConigley et al. 2010). The second was a quantitative study (SCGH HREC 2006-146) which examined the experiences of 100 patient-carer dyads at three time points during the disease trajectory: during combined chemoradiotherapy, and 3 and 6 months later. 31% of caregivers reported moderate distress (DT score 5-6) and 31% reported extreme distress (score 7-10). Caregivers also reported significantly more distress than patients (mean 5.1 vs. 4.1; paired t test p=0.01). Caregiver distress was associated with higher scores on the general health questionnaire (r=0.61, p<0.001). The top 5 moderate/high caregiver unmet needs were: 1. accessing prognostic information; 2. accessing financial support and government benefits; 3. accessible hospital parking; 4. impact of caring on usual life; and 5. reducing stress in the patients’ life. These preliminary results will be presented in a poster at COSA in November 2012. The development of our intervention is based on our preliminary data and the identification of several key components including the caregiver’s preparedness to care, sense of control, competence, self-efficacy, anxiety, depression and distress, social support, information, a sense of reward, meaningfulness, positive emotions, optimism, respite and relationship with the care-receiver. Our intervention is currently in the development phase and is aimed to cover all these areas. We are seeking support and advice regarding the development of the intervention from a variety of sources including medical oncologists, neurosurgeons, radiation oncologists, palliative care physicians, psychologists, social workers, nurses, experienced representatives from Carers WA and COGNO, as well as consumer representatives. The purpose of this project is to determine the feasibility and efficacy of this supportive-educational intervention for caregivers of patients with HGG.
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Senior Early Assessment and Streaming Adult Patients using a Senior Work up and Treatment Team (SWAT) in a Tertiary Hospital Emergency Department – a randomised control trial
Improving public hospital performance and efficiency has become an important health policy priority with the introduction of the National Emergency Access Target initiative. Reducing patient length of stay in the emergency department is an important component of this initiative and various strategies have now been introduced and proposed to try and tackle this problem. One such proposal is improving access to senior clinicians in the emergency department as soon as possible after a patient arrives. A flexible model of senior workup and assessment teams have been implemented at RPAH which consists of an Emergency Physician, Senior Emergency Nurse and Resident Medical Officer with the aim of performing limited and directed patient assessments, initiating treatments and arranging imaging studies and consultations before formal assessment has been completed within the emergency department. These SWAT (Senior Workup Assessment and Treatment) teams are rostered from 10AM to 5PM on days that a SWAT shift can be staffed. The objective of the present study is to evaluate the impact of this clinical redesign on patient length of stay and the ability to discharge or admit a patient from the emergency department within four hours of patient arrival. the results of this quality improvement initiative will be useful in assessing the effectiveness of such models of care and redesigning processes of care in the emergency department.
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Does Vitamin D supplementation in pregnancy improve maternal glucose metabolism or prevent gestational diabetes?
This study will determine whether taking additional Vitamin D supplementation in pregnancy, above that contained in conventional pregnancy vitamin tablets, improves a woman's glucose metabolism and prevents the development of gestational diabetes, a common complication of pregnancy in Australia.
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Can uraemic symptoms be reduced by changing the saliva environment in chronic kidney disease
Patients with renal failure feel increasingly unwell as the disease progresses. The onset of taste changes, nausea, vomiting, fatigue, anorexia, and weight loss is thought to be due to an accumulation of toxins that the kidney can no longer get rid of as the patient becomes more and more uraemic. No single uraemic toxin has been identified that accounts for all the clinical symptoms. Taste influences food palatability and appetite and may cause an inadequate dietary intake contributing to malnutrition often seen in renal failure. Patients with kidney disease often suffer taste and upper gastro-intestinal problems and may need to start dialysis due to these symptoms. This implicates an accumulation of toxins but the responsible toxins have not been determined. The purpose of this project is to improve health outcomes and nutritional management of patients with chronic kidney disease. We would like to find out which strategies improve uraemic symptoms such as taste changes and nausea often experienced by chronic renal failure patients. If the reasons for these symptoms are found, the most suitable techniques to improve their symptoms can be determined. This would enhance renal patients’ wellbeing and potentially their nutritional status and may delay the need for dialysis. A total of 30 people will be asked to participate in this project recruited from the Renal outpatient clinics. Patients will be asked to provide saliva sample for analysis on two separate occasions. They will be asked to complete a questionnaire on symptoms concerned with taste and eating and record what they eat over 24hours at the start of the study and at the end of the study. Patients will be asked to taste and rate a variety of fluids using common foods or food ingredients thought to influence uraemic symptoms. Patients will then be asked to sip or rinse their mouth with the fluid they felt most beneficial to their symptoms for about 3 weeks. The toxins found in the saliva will be compared to symptoms and the solutions chosen and if their use improved any uraemic symptoms and nutritional intake.
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Deep Brain Stimulation (DBS) in Treatment Refractory Obsessive-Compulsive Disorder (OCD)
The aim of this study is to assess the extent to which Deep Brain Stimulation (DBS) may help people suffering with treatment refractory Obsessive-Compulsive Disorder (OCD) and to evaluate how psychological functioning and activity within the brain is affected by DBS. There will be up to 12 participants with treatment refractory (not responding to multiple other treatments) obsessive-compulsive disorder (OCD) recruited into this study. Participants will be participating in a cross-over study, in which each participant has different phases of treatments (see below), in turn. The study will consist of 3 sequential treatment phases. i) After DBS implantation by surgery, participants will enter an open phase of 8 months during which they will be evaluated every 2 weeks (each visit will take approximately 60 minutes) for severity of symptoms and optimal adjustment of the settings of the DBS device. Once an initial and substantial decrease (6 points) in Y-BOCS score (a measure of OCD severity) has been obtained, a CBT (cognitive-behavioural therapy; a psychological treatment) program will be added. ii )After the above open phase (in which the participant knows that the DBS device is switched on), participants will enter an optional 1-month, blinded, sham-controlled phase, in which they do not know whether the DBS device is switched on or off. Participants will be randomly allocated to this phase of the study, with 2 periods of 2 weeks with the stimulators blindly turned on (active stimulation) in one period and turned off (sham stimulation) in the other period. A computer-generated random sequence, will be used to allocate active or sham treatment. Participants will be assessed 3 times (at baseline, after a 2-week period of active or sham stimulation, and after the second 2-week period of reversed active or sham stimulation), with each visit being approximately 60 minutes in duration. Treatment with CBT will be continued during this phase. iii)The ensuing maintenance phase will continue, during which participants will be evaluated at 3-month intervals. Each visit will last approximately 60 minutes. The stimulators will be turned on for all participants, and stimulation parameters will be adjusted if necessary. In terms of psychotropic medication, participants will continue with their prescribed medication for OCD without change for 2 months prior to implantation and with continuation during the first 2 phases of the study (that is for 9 months after implantation). Participants will have neuropsychological, MEG and PET scans of the brain, as described , if they consent to do so. If participants do not consent to any component of these, they will still be required to continue in the open, double-blind sham-controlled and maintenance phases of study to continue in the study, as well any of the neuropsychological, MEG and PET components of the study that they consent to, without coercion or prejudice to their care. The batteries in the DBS device will have to be changed possibly within 12 to 24 months, if a non-rechargeable neurostimulator (does not require regular recharging of the battery by participants) is used, and up to 9 years if a rechargeable neurostimulator (requires regular recharging of the battery by participants, approximately one to three times weekly) and also depending on settings,usage. The selection of a rechargeable or non-rechargeable neurostimulator is based on participant preference about monitoring and recharging the battery in the neurostimulator. Replacement of the neurostimulator requires additional surgery, under a general anaesthetic, to remove and change it in its position under the collar bone.
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The short term effect of thorax manipulation on lung function
The aim of this study is to examine for differences in pulmonary function before and after the application of manual therapy to the thoracic spine and thorax (i.e., chest wall). We hypothesize that pulmonary function will improve following the application of manual therapy and that the improvement will be sustained throughout the post-intervention period.
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General practitioner documentation of dementia diagnosis: a randomized controlled trial using the interventions of education and audit feedback
This project follows a pilot project conducted in 2007 measuring the effect of the interventions of education and audit feedback on GP detection of dementia in their at risk practice population. The current trial tests the impact of an educational workshop on GP dementia guidelines and audit feedback of the number of documented dementia diagnoses in the patient population aged over 65 years seen in the two 6 month periods before and after commencement of the trial. The rationale is that documentation of this diagnosis in general practice is suboptimal but is necessary if dementia patients are to access appropriate support and treatments. GPs are recruited from practices in North Queensland and clustered according to practice location. Clusters are randomly assigned to one of four groups: interventions of educational workshop, audit feedback, educational workshop plus audit feedback, or control (usual practice). At the end of the trial all GPs are offered audit and educational workshops which enables them to receive 40 category 1 professional development points.
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Balance Exercise for multiple sclerosis
In our recent study we found that ~ 60% of people with MS experienced one or more fall during 6-month follow up and 31% fell 3+ times. This is consistent with previous reports. High rates of falls in MS are significantly associated with poor performance in clinical balance tests, especially stepping ability. There is limited information on balance training in MS. Here, we propose to use an interactive step training system as a home-based exercise program to improve balance and consequently prevent fall risk in MS. The interactive system has been developed by our group and has been shown to have beneficial to older adults. This will be a pilot study to prepare for a larger randomised controlled trial to formally evaluate potential fall-related health benefits of interactive step training system use by people with MS.
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Can 3-Tesla Magnetic Resonance imaging of the prostate be useful in making the decision to perform prostate biopsy in men with a high or concerning prostate specific antigen (PSA) ?
The study is evaluating a novel diagnostic technique for prostate cancer, known as multi-parametric magnetic resonance imaging (mpMRI). Who is it for? You may be eligible to join this study if you are a male who has been referred to a urologist with a high or concerning PSA (Prostate-specific antigen), or abnormal prostatic rectal examination. Trial details All participants in this study will undergo current treatment guidelines for diagnosis of prostate cancer, including PSA measurements and 12 core Transrectal ultrasound (TRUS) guided needle biopsies of the prostate. In addition, a highly specific imaging process, known as multi-parametric magnetic resonance imaging (multiparametric MRI or mpMRI), will be used to further assess the prostate gland and be used to take MRI guided biopsy of any MRI detected lesions. This examination takes 20-30 minutes and involves the administration of a gadolinium contrast agent. It is anticipated that the results of this study will lead to better informed treatment of prostate cancer and suspected prostate cancer, for example by decreasing the number of men who need biopsies, decreasing the number of biopsy cores in those men who need them from 12 to 2 or 3, and decreasing the overtreatment of non-significant prostate cancer