Epilepsy Action Research Grants Programme 2007-2008

The role of resilience for good quality of life in epilepsy and factors promoting such resilience.  

Professor Ann Jacoby, University of Liverpool
£69,052 – 24 months

The aim of the research is to explore personal, family, social and policy factors that help people with epilepsy (PWE) have a good quality of life (QOL).

Previous research emphasises how epilepsy can negatively affect a person’s QOL. The study will seek to understand what factors, other than good seizure control, help them maintain a good QOL. It will focus on a research concept called ‘resilience’: that is, the process of achieving positive and unexpected outcomes in adverse conditions. 

It is expected that the research will identify why some PWE demonstrate greater resilience than others when faced with having epilepsy. This could lead to the development of ways of promoting resilience and so maintaining a good QOL.  

Professor Mathew Lambon-Ralph, University of Manchester
£15,000 – 6 months

Semantic memory refers to the store of meaning that we attach to words, objects and people – and is critical in language and nonverbal activities. A number of neurological disorders damage a brain region called the anterior temporal lobe. Studies of these patients show that this region is very important for semantic memory. This is the part of the brain that is removed in some patients who undergo resection as treatment for intractable epilepsy. 

There are almost no detailed studies of semantic memory in such patients. General clinical neuropsychological assessments are not designed to assess semantic memory. In work with other neurological conditions, the researchers have developed a set of very sensitive assessments for semantic memory. In this project they will transfer these proven measures to a group of patients who have had resections.

This project will provide important, new clinical information for people with epilepsy, their carers and clinicians.  

Conversational displays of coping resources in clinical encounters between patients with epilepsy and neurologists: a pilot study.

Dr Markus Reuber, University of Sheffield
£15,000 – 6 months

The degree to which epileptic seizures cause a person with epilepsy (PWE) to be disabled is not only explained by the severity or frequency of their seizures but also by their ability to live with seizures. The ability to deal with adversity is determined by a number of factors including the range of coping methods which the PWE has at their disposal. Some methods are helpful (because they reduce the impact of a problem) others less so. Unhelpful (or “negative”) ways of coping are associated with poor seizure treatment outcomes.

Different ways of coping are usually measured with self-report questionnaires. However, these questionnaires may produce a biased picture because people may find it difficult to judge their preferred coping styles objectively.

This study will observe more directly how PWE cope by studying how they talk about their seizures when they first meet a neurologist.  

What factors effect the reporting of adverse effects of antiepileptic medication in a population attending an epilepsy service?

Graham Powell, University of Liverpool
£1,500

Anti-epileptic drugs are the main stay of treatment for people with epilepsy. Up to 60-70% of people become free of seizures long term, but this may come at the cost of side-effects. Although two patients may be experiencing the same side-effects, their willingness to report these to the healthcare staff may differ. A number of factors may influence this decision such as the type of side-effect, levels of depression or anxiety and personality traits. This study will assess how important each factor is when an individual patient is deciding whether or not to report their side-effects.

120 patients with epilepsy will be provided with a ‘study pack’ to complete at home. Included will be numerous self-report questionnaires assessing many factors about the participants. Statistical methods will then be used to assess how important each factor is in influencing an individual patient to report their side-effects.

To many people with epilepsy, having as few side-effects as possible is as important as becoming free of seizures. To maximise quality of life it is important that side-effects are reported so that changes to a patients’ treatment can be made if appropriate. This study will contribute to the knowledge base and provide an insight for further research to go some way to achieving the long term aim of improving the quality of life of patients with epilepsy in the future through improved communication about side-effects with the healthcare staff.  

Adolescents’ perceptions of communicating and interacting with health professionals and their satisfaction with their experiences.

Sarah Todd, University of Derby
£1,500

In epilepsy care research, there are few studies that have explored the experiences of adolescents communicating and interacting with health professionals.  In light of this, my aim was to bridge this gap.  Six adolescents diagnosed with a form of epilepsy were interviewed with a parent present.  The main findings were that, overall, patients were satisfied with the communication behaviours of practitioners.  However, both patients and parents were unsatisfied with the level of information provided and of major concern, the majority of patients and parents were unsatisfied with decisions made by their practitioners regarding treatment.  Most parents felt that a lack of information and poor decision making was due to a lack of specialist knowledge in paediatric care, and a number of parents had sought the help and support of specialist healthcare providers through the private sector, such as consultant neurologists.

The main recommendations for care providers to take from this study are that adolescents with epilepsy should be provided with specialist healthcare as soon as symptoms suggest a neurological condition.  The healthcare system should also facilitate a source of immediate advice for patients and parents, such as the provision of phone contact with a sapphire nurse.  Patients should be provided with detailed information about their condition and the potential issues they may face as a result of their condition (e.g. job seeking, starting a family, etc) in order to help the patient and family adjust appropriately with minimal anxiety.

What is the nature of the language used by people who are experiencing seizures to describe both epileptic and non-epileptic seizures, and does this correlate positively with differential diagnosis?

Valerie Featherstone
£1,500

This research aims to work on seizure descriptions which may help distinguish between types of seizures.

Many people referred to epilepsy clinics do not have epilepsy.  They are experiencing non-epileptic seizures which do not begin with electrical discharges in the brain.  Some people have both conditions. There is some evidence suggesting that language people use to describe their different seizures can help with diagnosis of these. 

Conversations with people who have not yet received a firm diagnosis of their seizures will be analysed using a patient centred method.

Because treatment for non-epileptic seizures is not based in neurology departments this could benefit people with epilepsy. More money, clinic and specialist time could be freed up for their specialist care.   

The Syndrome of Transient Epileptic Amnesia

Dr Christopher Butler, University of Edinburgh
£500 

Single pulse electrical stimulation (SPES) identifies structural abnormalities and predicts seizure outcome after epilepsy surgery

Dr Antonio Valentin, King’s College Hospital, London
£500