Sydney Epilepsy Incidence Study to Measure Illness Consequences

Child Epilepsy image Epilepsy imposes a substantial burden on individuals, their families, the community, and society as a whole. SEISMIC is the first Australian population-based epilepsy incidence study to examine this burden.

Background

Epilepsy is one of the most common neurological disorders in the world, with an annual incidence of 50 per 100,000 in developed countries equating to approximately 10,750 people newly diagnosed with epilepsy in Australia last year.

As a group, people with epilepsy usually require long-term medication use and sometimes surgery to control the unpredictable onset of seizures which may lead to poor psychosocial functioning, stigma, discrimination at school and in the workplace, removal of the right to drive a motorized vehicle, and poor mental health. Most people with epilepsy identify their primary areas of concern as stigma and social isolation, maintaining employment, education, driving and close personal relationships.

Despite the magnitude of the problem, many people with epilepsy may not receive effective treatment because there may be delays in seeking help due to ignorance, fear, illiteracy and cultural attitudes towards treatment, reduced availability of drugs or inability to pay for or adhere to treatment.

Aim

The specific aims are to identify the determinants and impact of newly diagnosed epilepsy on quality of life, mental health, clinical and community service use, and household economic burden in Australia

Method

This multi-centre three-year study will recruit and follow-up all people with newly diagnosed epilepsy living in the Sydney South West Area Health Service (SSWAHS, approximately 500 people expected from a base population of 520,000) in New South Wales, Australia. Participants will be interviewed at three time points: baseline, four and 12 months following first diagnosis.

The study team are a well established, cohesively operating network of academic researchers, research active epilepsy clinicians and members of not for profit epilepsy organizations Epilepsy Action and the Epilepsy Society of Australia, many of whom are involved in epilepsy service planning and policy development. This group is currently running the pilot phase of the proposed study.

Status

Recruitment commenced in October 2008 and is ongoing. Submissions for funding for the main study have been to NHMRC and ARC.

Institute Investigators

Collaborators

Current Funders