Who’s who in epilepsy? A medical market research guide

What are the facts?

Epilepsy is a neurological condition that causes seizures due to a sudden burst of excess electrical activity in the brain. This electrical activity creates a temporary disruption in the normal messages passed between brain cells and results in a seizure or fit. Most seizures happen suddenly without warning, last a short amount of time and stop by themselves, and the severity or type of seizure differs from person to person.

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How a person behaves during a seizure will depend on the area of the brain affected  – some will experience a trance-like state for a few seconds or minutes, whilst others lose consciousness and suffer convulsions. Generally, epileptic seizures can be divided into two types: focal seizures where the epileptic activity starts in just a part of the brain, and generalised seizures where epileptic activity occurs in both hemispheres of the brain. Although epileptic seizures can happen at any time, there are a number of triggers that make them more likely including stress, lack of sleep, drinking too much alcohol, missing meals, not taking necessary prescribed medications and lights that flash or flicker.

Incidence and statistics

Epilepsy is thought to affect over 500,000 people in the UK, with around 60 million people suffering with the condition around the world. Although approximately 87 people are diagnosed with epilepsy every day, there are around 124,500 people in England who have been misdiagnosed, making accurate estimates difficult to achieve. It is thought that one in 20 people will have a one-off epileptic seizure in their lifetime, with one in 50 having epilepsy at some point in their life. It can affect anyone, but is usually diagnosed either in childhood or in people over the age of 65.

Who treats it?

Epilepsy sufferers are treated by a multi-disciplinary team of experts including, but not limited to, neurologists, epileptologists, epilepsy nurses and oncologists, and there are a number of treatment centres throughout the UK for both adults and children.

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What are the main treatment methods?

Epilepsy is a long-term condition, however for most people the outlook is very good and there are a number of treatment options available:

Anti-Epileptic Drugs

Approximately two thirds of epilepsy sufferers can control their seizures with Anti-Epileptic Drugs (AEDs). AEDs aim to manage the condition by stopping seizures rather than curing it by stopping epilepsy completely. There are over 25 different AEDs available in the UK, and they work by changing the levels of chemicals in the brain that control electrical activity. Although it may take time to establish the right type and dose of AED before an individual’s seizures are controlled, with the right AED up to 70% of sufferers can successfully control their seizures.

Brain Surgery

Epilepsy brain surgery is carried out to try and stop seizures completely or reduce the number of seizures and make them less severe in order to improve quality of life. Doctors will only consider surgical intervention if there is an obvious cause in the brain for the epilepsy such as scar tissue. Surgery options include resection surgery where part of the brain is taken away or a type of surgery where one part of the brain is disconnected from another.

Deep Brain Stimulation

This type of treatment involves stimulating a particular part of the brain to prevent patients from suffering symptoms of a particular condition. Deep brain stimulation is only considered for people whose seizures have not been successfully controlled by AEDs or other types of surgery, and although there’s not a lot of evidence about how well it works, more than 50% of people with DBS had fewer seizures than before the surgery

Vagus Nerve Stimulation

Vagus Nerve Stimulation (VNS) is a type of treatment where a small device is implanted under the skin below the left collarbone. Similar to a pacemaker, this device is called a generator and works by stimulating the vagus nerve at regular times throughout the day to send impulses to the brain and preventing the electrical activity that causes seizures. Whilst it’s rare for an individual to become seizure free as a result of this treatment, many experience fewer or less severe seizures as a result.

Ketogenic Diet

Also called ketogenic therapy, the ketogenic diet is a specialist medical diet that is higher in fats and lower in carbohydrates than a typical diet. It is used to try and help children whose seizures cannot be reduced or stopped with AEDs – although if a child under the age of 2 has epilepsy they should be referred to a specialist centre.

Who can we access for market research?

Here at GKA we’ve conducted 26 epilepsy medical market research projects in recent years and have successfully recruited a number of specialists including:

  • Neurologists: Neurologists treat any types of disease that affect the body’s neurological function. They also treat diseases such as meningitis which can cause damage to the brain and lead to further complications such as epilepsy. Neurologists that specialise in epilepsy are not only involved in the diagnosis of the condition but the management too. This is usually to keep patient’s seizures controlled and have regular reviews of the condition. There are currently 1,146 Neurology staff working in the UK. We currently have 283 Neurologists on panel and a proportion of which will be treating epilepsy. When it comes to market research, we can recruit this respondent type of both qual and quant methodologies. Historically we have successfully recruited Neurologists treating epilepsy for central location interviews, focus groups and online studies. If you are looking to conduct central location interviews with this respondent type we’d recommend between ë£120 – ë£150 for honorarium per 60 minutes – they are a high level respondent in the UK and not all of them will be seeing epilepsy patients.

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We also need to consider recruiting from the main centres as this can hinder recruitment – there is a large Neurology centre in London where a large proportion of these treaters will be based so any restrictions on the number per centre may not be feasible and must be carefully considered.

  • Epileptologists: Generally, Epileptologists are Neurologists who specialise in epilepsy. They are directly involved in the treatment and management of specific epileptic conditions. These include epileptic seizures, seizure disorders and anticonvulsants. When it comes to MR studies, we have successfully recruited this respondent type for both qual and quant medical market research studies but need to be mindful of sample sizes when considering numbers as there are significantly less. We have recruited the following studies with this respondent type:
    • 30 x Epileptologists/Neurologists with a specialist interest in epilepsy for an online survey
    • 2 x Epileptologists, 4 x Neurologists, 6 x Paediatric Neuros for central location interviews
    • 6 x Epileptologists for online qual interviews
  • Epilepsy Nurses: Epilepsy Nurses are experts at providing information and support for people with epilepsy across a range of fields including both adult and paediatric. Epilepsy Nurses are usually the link between Neurologists and GP’s. Epilepsy Nurses are often involved in treating epilepsy by helping patients understand their condition further and how to cope with epilepsy as well as offer advice to patients too.

If you have an upcoming market research project on epilepsy and would like to understand more about who we can access, download our panel book now by clicking below.

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