Health-Related Quality Of Life In Intractable Paediatric Epilepsy: Using A New Measure To Improve Management
Funder
National Health and Medical Research Council
Funding Amount
$252,940.00
Summary
Until recently there was no adequate measure to assess the quality of life of children with epilepsy. Our Australian centre was the first to develop, validate and publish such an instrument; the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE). We now aim to collect more data using the QOLCE to gain further understanding of the effects of epilepsy and its treatment on the quality of life of children. We will determine if surgery in children stops seizures and improves quality of life. ....Until recently there was no adequate measure to assess the quality of life of children with epilepsy. Our Australian centre was the first to develop, validate and publish such an instrument; the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE). We now aim to collect more data using the QOLCE to gain further understanding of the effects of epilepsy and its treatment on the quality of life of children. We will determine if surgery in children stops seizures and improves quality of life. We also aim to find out if children with different types of epilepsies have unique quality of life issues. Finally, we aim to determine if the quality of a child's life depends on how well they are thinking and learning or how often they are having seizures. We will conduct this study in children with difficult epilepsy recruited from three major children's hospitals (Sydney Children's Hospital, the Children's Hospital, Westmead, Miami Children's Hospital, Florida USA) using a well designed methodology. Each child will have their particular type of epilepsy characterised using video and brain wave analysis. Each parent and older child will receive a quality of life package including the QOLCE to assess life function. In addition, all children will have an assessment of their thinking and learning by a child psychologist. At the completion of this project we will have established whether surgical treatment in children with epilepsy stops seizures and improves quality of life. This will allow clinicians and parents to better understand the effects of surgical treatment in this population. In addition, we will determine if problems in quality of life are associated with specific types of epilepsy. This information can be used to counsel families and tailor interventions and treatments. Finally, we will know whether a child's quality of life is determined by problems with thinking and learning and-or seizures.Read moreRead less
The Relationship Between Cognition And Interictal Discharges: Language Organization And Spike Localisation In BECTS
Funder
National Health and Medical Research Council
Funding Amount
$216,500.00
Summary
Benign epilepsy with centro-temporal spikes (BECTS, rolandic epilepsy) is a common cause of seizures in primary school children. Despite this it is poorly understood. Although seizures are infrequent, brainwave recordings (electroencephalography, EEG) reveal striking abnormalities present much of the time. Large, sharply contoured brain waves (spikes) are seen frequently, increasing during sleep. The pattern of the spikes, and the characteristic nature of seizures have suggested the epilepsy ari ....Benign epilepsy with centro-temporal spikes (BECTS, rolandic epilepsy) is a common cause of seizures in primary school children. Despite this it is poorly understood. Although seizures are infrequent, brainwave recordings (electroencephalography, EEG) reveal striking abnormalities present much of the time. Large, sharply contoured brain waves (spikes) are seen frequently, increasing during sleep. The pattern of the spikes, and the characteristic nature of seizures have suggested the epilepsy arises near the face area of the motor cortex, but this remains unproven. Functional magnetic resonance imaging (fMRI) is a safe and non-invasive way of imaging cerebral function, to reveal the brain at work . The technology is contributing to major advances in understanding of basic human functions such as language. Recent developments at the Brain Research Institute in Melbourne mean it is now possible to record EEG during fMRI. This has permitted visualisation of spike activity in the brain. The BRI is the only centre in Australia, and one of only a handful in the world that is able to perform such studies. One purpose of this study is reveal the location of spikes in BECTS. Recent studies have revealed subtle language and learning difficulties in BECTS children. Our preliminary EEG-fMRI studies have suggested spikes arise from brain regions adjacent to important language areas. It is possible that the frequent spikes of BECTS are interfering with adjacent cognitive processes. In addition to spike mapping, we will perform functional imaging of language to look for interactions between spike and language areas, and compare with patterns of language activation seen in normal children. The demonstration of spike related affects on cognition may lead to a reassessment of current epilepsy management strategies, which focus predominately on seizure control. This study, with researchers in Cairns and Melbourne, shares the benefits of world class research with regional Australia.Read moreRead less
Application Of Next Generation Sequencing For The Diagnosis Of Epileptic Encephalopathy: The Science, The Costings And The Impact.
Funder
National Health and Medical Research Council
Funding Amount
$122,714.00
Summary
Epileptic encephalopathy (EE) causes a devastating seizure disorder and intellectual disability in children. There are hundreds of rare, mostly genetic causes. Finding the cause is critical to guide treatment but currently investigations are expensive, invasive and rarely successful. This study aims to use the latest type of genetic testing to find the most cost and time effective way to diagnosis the most children, exploring the impact of testing on the child, family and health care services.