New study reveals gaps in Australians’ understanding of epilepsy

 

• New research reveals that 25% of Australians do not know the specifics of epilepsy as a health condition.
• One third of Australians (30%) express interest in learning more about epilepsy.
• 60% of Australians are not aware of drug resistant epilepsy, including many of those who are diagnosed with epilepsy or have an immediate family member with epilepsy.
• LivaNova Australia and Epilepsy Action Australia are calling for increased public education about epilepsy to make a positive impact on patients’ quality of life.

Sydney, Australia, 28 March 2023 – A recent study commissioned by LivaNova Australia, has found that despite widespread awareness of epilepsy, many Australians have limited understanding of the condition and its treatments.

The study found that over half (55%) of respondents have heard of epilepsy, yet a quarter (25%) did not know the specifics of epilepsy or wanted to know more. Interestingly, 4% admitted that they have never heard of epilepsy as a health condition. This is equivalent to 839,000 Australians based on the study sample size, and close to the number of Australians (approximately 800,000) who will develop epilepsy during their lifetime.

Additionally, one fifth (21%) of respondents were not aware of how the condition can significantly affect a person’s quality of life.

Carol Ireland, Chief Executive Officer at Epilepsy Action Australia says that the study results reinforce the importance of consistent awareness raising and education activities, as there is a knowledge gap that needs to be addressed.

“Epilepsy is often misunderstood as “just seizures”. The study highlights an important need for more public education about epilepsy, its complex nature and impact on people living with the condition,” said Ms Ireland.

“Epilepsy is one of the most common brain disorders, yet there is still work to do to educate people on how burdensome this condition can be. It is encouraging to see our industry partners driving awareness in this space.”

The new research also revealed another area of significant oversight, drug resistant epilepsy. While many Australians are aware of epilepsy generally, six in ten (60%) Australians are not aware of drug-resistant epilepsy (DRE). The awareness of this form of epilepsy is low even among Australians diagnosed with epilepsy and those who have an immediate family member with epilepsy, with four in ten (40%) being unaware of this condition.

Donna Tymensen, Country Director, LivaNova Australia and New Zealand says better awareness of DRE is needed to encourage earlier diagnosis and make a positive impact on quality of life for people living with the condition.

“Drug-resistant epilepsy affects about 30% of people diagnosed with epilepsy. It is concerning that so many of us are unaware of it and the additional challenges it causes to patients,” said Ms Tymensen.

“We need to do more to raise awareness of the fact that there are many types of epilepsy and that patients are in need of tailored solutions and support services that should cater for their individual experiences”.

Drug resistant epilepsy refers to when a person has failed to become (and stay) seizure free with adequate trials of two antiseizure medications.

The study found that almost one in three (31%) Australians had tried three or more treatments without success in achieving seizure freedom, which is in line with global research.

The new consumer study found that Australians’ knowledge of epilepsy treatments has also not kept up with innovations in the space. While 77% of Australians were aware of some epilepsy treatments, only 42% of Australians are aware of at least one alternative treatment (surgery, diet, vagus nerve stimulation, and other treatments).

Uncontrolled epilepsy has major psychosocial and economic impacts on patients and the Australian community. The total annual cost of epilepsy in 2019-20 in Australia was estimated at $12.3 billion. This includes costs related to health care, productivity loss, informal caring, equipment, transportation and economic efficiency.

LivaNova and Epilepsy Action Australia are calling for increased public education about epilepsy and its treatments, as well as increased support for people with epilepsy and their families across all aspects of life.

For more information about drug-resistant epilepsy, visit LivaNova: https://www.livanova.com/epilepsy-vnstherapy/en-au

For information about epilepsy and support services, visit Epilepsy Action Australia: https://www.epilepsy.org.au

 

ENDS

Media Contacts:   

Olivia Carolan
Palin Communications
olivia@palin.com.au
0414 440 788

Anastasiia Nazarenko
Palin Communications
anastasiia@palin.com.au
0435 977 559

 

About Epilepsy

Epilepsy is a disease of the brain characterised by the tendency to have recurrent seizures, which are temporary disruptions of the electrical activity in the brain. Epilepsy is not necessarily lifelong – some epilepsies are age related and seizures stop by a certain age. Latest estimates suggest that there are 151,000 people living with epilepsy in Australia, and about 1 in every 3 Australians will develop the condition in their lifetime. Although there is a broad overarching term to describe epilepsy, there are many types of epilepsy, seizures can look very different among individuals, and the condition affects every person with epilepsy differently.

About the study

The study surveyed a nationally representative sample of 1,011 Australians aged 18 years and older in between 2nd – 6th March 2023. The survey was conducted using an online survey administered to members of the YouGov Plc Australian panel of 71,000+ individuals who have agreed to take part in surveys. Following the
completion of the survey, the data was weighted by age, gender and region to reflect the latest ABS population estimates.

 

About LivaNova

LivaNova PLC is a global medical technology company built on nearly five decades of experience and a commitment to improve the lives of patients around the world.
LivaNova’s advanced technologies and innovative treatments provide meaningful solutions for the benefit of patients, healthcare professionals and healthcare systems. Headquartered in London, LivaNova has a presence in more than 100 countries worldwide.

 

References

1. YouGov. (2022). LivaNova epilepsy consumer research survey. [data on file].
2. Epilepsy Action Australia. (2023). Epilepsy: The facts. Retrieved from https://www.epilepsy.org.au/about-epilepsy/
3. Epilepsy Foundation. (2022). Drug resistant epilepsy. Retrieved from: https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy
4. Mohammadzadeh, S, & Nazarbaghi, S. (2022). Clinical Neurology and Neurosurgery, 213.
5. Deloitte, The economic burden of epilepsy in Australia 2019-2020, accessed at https://epilepsyfoundation.org.au/wp-content/uploads/2020/02/Economic-burden-of-epilepsyFinal-Report-Feb-2020.pdf
6. AIHW. (2022). Epilepsy in Australia. Retrieved from https://www.aihw.gov.au/reports/chronicdisease/epilepsy-in-australia/contents/how-many-australians-have-epilepsy.
7. Healthdirect. (2023). Epilepsy. Retrieved from https://www.healthdirect.gov.au/epilepsy