Daily burden of epilepsy can outweigh clinical symptoms
Many practitioners think of epilepsy as a clinical problem involving seizures and other major events, primarily requiring treatment using medication and monitoring. Yet the daily burden of living with epilepsy - the psychosocial, educational and economic pressures it can bring - are considerable, though little studied.
The study will take focus on the diverse population of the Sydney South West region. The aim is to recruit a group of 500 to 600 patients from various ethnic backgrounds and socioeconomic groups. These will include migrants and non-English-speaking residents. Extending the range even further, the study will be looking at all age groups, with a view to understanding how the consequences of epilepsy affect people and their families at different stages - educational opportunities for the young, economic opportunities for adults, and so on.
To achieve this diversity, the researchers are casting the net beyond the usual EEG units and epilepsy specialists to include aged care facilities, a range of specialists and - for the first time in such a study - general practitioners. As epilepsy is often managed by specialists and GPs collaboratively, it is hoped the study will benefit GPs by giving them a greater understanding of epileptic patients’ lives and the effectiveness of non-medication interventions.
SEISMIC will begin in August 2008. Each patient recruited will be interviewed soon after diagnosis and then followed up for a year. With two years for recruitment, this means the study will last for three years overall. SEISMIC is a joint investigate effort between The George Institute, Epilepsy Action and key NSW neurologists.
GPs or others who are keen to become involved in SEISMIC should contact Dr Nick Glozier at The George Institute on +612 9993 4500.