Outcomes & impact portfolio summary & review april 2012, for ukern
Impact & Outcomes CSG PORTFOLIO SUMMARY & REVIEW June 2012, FOR UKERN Written and Prepared by: Professor Gus A Baker CSG Core working group: Gus A Baker, Ann Jacoby, Mike Kerr, Helen Cross, Henry
Smithson, Jill Clayton Smith, Graham Boyd and Sarah Monkman
• A comprehensive review of impact and outcomes related studies on the UKERN
research portfolio between Feb 2010 and 2012 was undertaken, and compared
against published national and international epilepsy research priorities.
• The UK is active in epilepsy research, with a broad range of basic science and
clinical studies, both industry and investigator lead, taking place across several
centres with diverse funding sources. There is a history in the UK of conducting
research that draws attention to understanding the impact of epilepsy and its
treatment, particularly in respect of quality of life issues. More recently attention ahs
been drawn to a better understanding to the neuropsychological consequences of
epilepsy and an appreciation of the effects of AEDs on teratogenicity.
• Impact and outcome studies cover a range of a broad scientific endeavours Aim of this document:
This Report brings together published research recommendations for research of direct
relevance with respect to impacts and outcomes of epilepsy:
• Determine the most important areas for future research relevant to the impacts and
• Compare all the recommendations of future research to the current portfolio of
research in the UK, and known studies in development elsewhere and identify
significant gaps in the research portfolio
Consensus on the most important areas for future research for Impact and Outcomes
There are a number of recent documents highlighting the need to address gaps in
research and these include the European Brain Council 2006, ILAE Taskforce, 2009,
NINDS Epilepsy Research Benchmarks, 2007 and DUETS report, Patient’s priorities for
research into epilepsy 2008. The most relevant recommendations in relation to the Impact and Outcomes group can be grouped into the following sections: Section 1 Identification of the cause and extent of Cognitive Impairment and Co-morbidities
• Identify the cause and extent of cognitive impairment and psychiatric comorbidity
associated risk factors using prospective and case‐control studies in people with
• Research into memory problems • Develop and assess interventions to ameliorate cognitive impairment and
• Identify the cause and extent of cognitive impairment and psychiatric comorbidity
and analyse associated risk factors using prospective and case‐control studies in
• Delineate the natural history of comorbidities in epilepsy, including the nature of the
relationship between specific comorbidities and the underlying causes of epilepsy,
specific features of epilepsy (e.g., age of onset, frequency of seizures, interictal
epileptiform abnormalities), and treatment [e.g., antiepileptic drugs (AEDs), surgery].
• Determine if the affective, attentional, and cognitive disorders in people with
epilepsy are the same as those in people without epilepsy with respect to natural
history, presentation, treatment, and underlying mechanisms.
• Develop at least one efficacious care model for the diagnosis and treatment of
epilepsy and validate that it improves the outcomes for patients with comorbidities.
• Develop and implement a standardized protocol for screening pharmacologic and
non-pharmacological treatments of epilepsy for their amelioration or exacerbation of
neuropsychiatric and cognitive comorbidities.
Section 2 Treatment of Neuropsychological conditions and Co-morbidities
• Treatment of Epilepsy Comorbidities (cognitive, neuropsychiatric, other adverse
Short term: determine whether the treatments used for cognitive or
neuropsychiatric conditions in isolation are effective when utilised in
people with epilepsy (or whether different strategies are required)
Short term: develop at least one efficacious care model for the
diagnosis and treatment of epilepsy and validate that it improves the
outcomes for patients with comorbidities.
• Develop and assess interventions to ameliorate cognitive impairment and
• Develop and validate novel treatments and management strategies for cognitive
and neuropsychiatric disorders of people with epilepsy that are not adequately
treated with currently available therapies.
• Research into treatments with fewer side effects
a. Noted that for many patients side effects are more worrying/harder to
b. Including specifically physical, intellectual /cognitive, emotional side
• Determine the optimal treatments for the neuropsychiatric and cognitive
Section 3 Patient Education and Support
• Determine the impact of genetic testing on medical care and patient counselling. • Research into the level of expertise among the medical profession, and other
relevant professionals (schools, employers)
• Research into the effectiveness of psychological support/support with psycho‐social
• Research on patient information provision/access to the right specialists/information.
Section 4 Others
• Research into stigma associated with epilepsy • Develop/validate effective methods for the treatment of Non‐Epileptic Seizures • Research into the level of expertise among the medical profession, and other
relevant professionals (schools, employers).
• Research on patient information provision/access to the right specialists/information.
8. Summary Porfolio. Methods: Research projects underway in the UK were identified by a search of clinical
research network and funders websites, and supplemented by information obtained via
electronic calls to epilepsy related mailing lists and personal contacts. A questionnaire was
sent to all project PI's and they were asked to return information about the project. All
available information on projects identified as primarily focused on Impact and Outcomes
(I&O) of epilepsy (and related conditions) were reviewed by members of the I&O clinical
study group (CSG) using a pro forma to extract information about study design, patient
group and outcomes. Reviewers were asked to comment on relevance of the research.
A total of 40 studies (appendix 1) were allocated to the I&O CSG.
Available material for each study varied considerably, with abstracts obtained for only 20
Nature of the studies
Of these studies the majority of studies were related to research specifically investigating
the neuropsychological consequences of epilepsy. There were two studies relating to pre-
conceptual counselling and the neurodevelopmental effects of exposure to antiepileptic
drug treatment. One study relating to studying patient perceived side effects of anti-
epileptic drug treatment and three studies relating to quality of life/resilience and decision
Which Organisations were funding
The majority of the studies were funded by Epilepsy Action or ERUK with the MRC and
Welcome Trust supporting between them only three of the identified studies.
Location of Research Work conducted
The majority of studies were conducted at either Kings College London or University
College London. However other institutions such as the Universities of Sheffield,
Liverpool, Cambridge and Oxford were also involved in conducting research in the area of
Review of the abstracts
There was a predominance of studies  relating to neuropsychological functioning.
These included research into long-term forgetting [see abstracts 5 & 6], reorganisation of
language and memory systems [see abstract 4], the consequences of temporal lobe
surgery [see abstract 8], the neuropsychological profile of JME [see abstract 9], the
neuroatonomical basis of frontal lobe cognitive dysfunction [see abstract 13], transient
epileptic amnesia and facial recognition [see abstract 22] and improved spatial learning as
a result of restoration of neurogenesis. These studies were rated as being “very relevant”
There were two studies relating to the outcome of pregnancy and pre-conceptual
counselling conducted by the Liverpool and Manchester Neurodevelopment group
[LMNDG]. These studies were rated as highly relevant. This is a fairly contentious area of
research and both these papers are part of a concerted effort to address this area.
Patient perceived Quality of life
There were two studies from the University of Liverpool Outcomes research group; they
were related as highly relevant. One study focussed on the role of resilience in
determining quality of life and one study looking at a better understanding of Quality of life
The single study by Wieshmann and colleagues has been investigating patient perceived
side effects of AED treatment. It was also ranked as very relevant by the reviewers.
Impact of Epilepsy and its treatment
Two studies were involved in understanding the impact of epilepsy. One of the studies
focussed on how families adjust to having a child with epilepsy, while the other considers
the impact of memory problems. The latter study attempts to understand the relationship
between objective and subjective complaints of memory functioning for people with
epilepsy. A third study in this section explores the reporting of depression as a co-
morbidity of epilepsy by the Cardiff Research Group. The latter study has implications for
the management of co-morbidities in general practice, while the former studies are much
more empirical in their nature but important raise awareness about the wider impact of
There is a body of research in the UK that has a strong record of publishing high quality
research into the impact and outcomes of epilepsy and its treatment. The abstracts
reviewed clearly identify that there remains a desire to conduct high quality research that
directly relates to helping improve the quality of life of those with the condition. The breadth
and depth of research highlights the interest that this condition engenders and the scope
available to conduct meaningful research.
It is important to understand that while the authors have attempted to be inclusive in the
coverage of research under the banner of the I & O, there is very likely research that has
not been captured and therefore not reviewed.
It was not possible, within the remit of the group, to identify every piece of research
currently being conducted in this arena. However the abstracts reviewed probably reflect
areas of research that are currently being conducted.
A number of observations can be made in respect of the studies reviewed today and these
• Recently published documents [see section 3] have highlighted a number of gaps in
the research agenda that have relevance for the I & O group and these include: the
identification and cause of cognitive impairment; identification and cause of co-
morbidity; development of care models and interventions; providing treatment for
both cognitive impairment and co-morbidities; determine the impact of psycho-
educational programmes and the development of intervention programmes for
• The pattern of research in the UK, as gleamed from the abstracts, goes someway in
meeting the recommendations of the various reports.
• The most obviously glaring deficit is the development of intervention programmes
for neuropsychology and the co-morbidities. The authors are aware of recent
funding from the UK NIHR to conduct trials to investigated psychoeducational
programmes in adults and children with epilepsy. However there is no known
research investigating programmes that address intervention for ameliorating the
impact of neuropsychological deficits or co-morbidities such as anxiety and
• It is the opinion of members of the I & O group that programmes of research aimed
at intervention are probably the most difficult to devise, implement and fund.
However the UK has an enviable record of multi-centre studies which inevitably will
be necessary to conduct this type of research. The challenge will be to persuade
funding bodies to recognise the importance of these areas and provide sufficient
funding to support well designed studies.
• In light of the impending retirement of key leaders into research focussing on impact
and outcome there is a need to develop individuals or groups who are likely to be
taking a major role in the next decade. As part of succession planning it will be
necessary for the funding agencies to consider proving support e.g. grants and
fellowships to help develop the future “stars” in this area of research.
APPENDIX I: ABSTRACTS AVAILABLE FOR REVIEW 1. RESILIENCE
A considerable body of research highlights that epilepsy has the potential to produce marked decrements in
quality of life (QOL); but QOL outcomes in epilepsy are heterogeneous, with some people maintaining good
QOL in face of poorly controlled epilepsy and others reporting poor QOL despite their condition being well
controlled. Most studies to date have emphasised risk factors for impaired QOL. Much less addressed is the
We will examine the role of resilience, ie. the process of achieving positive outcomes in adverse conditions,
for life quality in people with epilepsy (PWE) and explore factors promoting it. We will focus on the processes
by which individuals manage to maintain high QOL despite developing epilepsy, referring not only to
individual psychological traits, but also to a range of external factors. Our findings will be important for
informing future intervention studies to maximise QOL and full potential of PWE.
Seizures and epilepsy can have a profound impact on a person’s quality of life. To date, research on quality
of life in epilepsy has largely been concerned with the quality of life of people with already established
epilepsy. As a result, we do not have a clear understanding of what factors contribute to changes in quality
of life, both good and bad, that occur from the point of diagnosis of epilepsy onwards.
We propose to continue following up a large group of people with newly diagnosed epilepsy, who agreed to
take part in a study comparing different antiepileptic drug treatments. We will follow everyone for four years,
collecting information about their health, everyday functioning and quality of life, using postal questionnaires.
This will allow us to detect any changes that occur in quality of life and what is responsible for these changes.
Our study will allow us to investigate how and why quality of life is affected by having epilepsy. The findings
will be valuable for both patients and healthcare professionals treating them, since they will help us to
understand how those affected can best be supported medically and socially to maintain a good quality of
Taylor J & Baker GA (2010). Newly diagnosed epilepsy: Cognitive outcome at five years. Epilepsy &
Taylor J, Jacoby A, Baker GA, Marson AG, Ring A, Whitehead M. Factors predictive of resilience and
vulnerability in new-onset epilepsy. Epilepsia, online. Doi: 10.1111/j.1528-1167.2010.02775.x
Baker GA & Taylor J, on behalf of the SANAD group (in submission). Newly diagnosed epilepsy:
Cognitive outcome at 12 months. Re-submitted to Epilepsia
Taylor J, Jacoby A, Baker GA, Marson AG. Self-reported and parent-reported quality of life of children
and adolescents with new-onset epilepsy. Re-submitted to Epilepsia.
COGNITIVE CONSEQUENCES OF IN UTERO EXPOSURE TO SECOND GENERATION
It has been shown that mothers who take antiepileptic drugs (AEDs) during pregnancy have an increased
risk of having a baby with a physical malformation, such as a cleft lip and palate. There is also evidence to
suggest that exposure to AEDs in the womb can have a long-term impact on the intellectual and cognitive
abilities of children, including language skills, memory and intelligence. Studies to explore the long-term
consequences of exposure to older AEDs (such as carbamazepine and sodium valproate) during pregnancy
are currently underway. However additional projects are required to determine whether the newer AEDs
(gabapentin, lamotrigine, levetiracetam, oxcarbazepine, tiagibine, topiramate, and virgabatrin) have similar
The researcher team will identify a total of 160 children (aged 6 years and over), born to mothers with
epilepsy who were treated with the AEDs gabapentin, topiramate or levetiracetam during pregnancy, using
the UK Epilepsy & Pregnancy Register. They will then assess the cognitive ability of these children, at home
or in school, using a variety of specially designed tasks.
This project will offer new information about the long-term consequences of exposure to modern AEDs in the
womb, and will be immediately applicable to patients. Prospective mothers with epilepsy will therefore have
the chance to make more informed decisions about their drug treatment during pregnancy.
4. INVESTIGATING REORGANISATION OF LANGUAGE AND MEMORY SYSTEMS IN TEMPORAL LOBE EPILEPSY
The absence of major aphasia following anterior temporal lobectomy to treat TLE has been interpreted as
evidence that anterior temporal cortex has little role to play in speech comprehension and production. This
contrasts with studies in patients with semantic dementia, and some functional imaging studies on normal
subjects. My study will investigate the functional anatomy of speech comprehension and production, with
emphasis on anterior and mesial temporal lobe structures, in patients with chronic TLE who have not
undergone neurosurgery. In particular, it will assess whether reorganisation accompanies chronic focal
temporal lobe epileptic activity, invalidating inferences about normal organisation drawn from the behavioural
effects of anterior temporal lobectomy. In parallel, the study will investigate episodic verbal memory encoding
and retrieval that accompanies speech comprehension and production.
5. ACCELERATED LONG-TERM FORGETTING IN EPILEPSY: THE ROLE OF INTERFERENCE
The majority of people with epilepsy have problems with their memory. These problems may be partly due to
a recently discovered form of memory impairment called Accelerated Long- term Forgetting (ALF). People
with ALF can learn information well but find that it fades rapidly from memory over a period of days to weeks.
This project is investigating why some people with epilepsy forget things more quickly than they should.
Normally, new memories are gradually strengthened or ‘consolidated’ over time. Based on our previous work,
we suspect that, in epilepsy, memory consolidation is disrupted by ongoing mental activity. Furthermore, we
expect that a period of mental inactivity (peace and quiet) after learning will help to reduce forgetting. We are
studying forgetting rates in a group of people particularly prone to ALF – those with a form of epilepsy called
transient epileptic amnesia. In particular, we are examining how memory performance varies according to the
amount and type of mental activity that follows learning.
By understanding the mechanisms that lead to rapid forgetting in epilepsy, we are working towards the
development of strategies and memory aids specifically targeted to helping people with epilepsy.
THE NEURAL BASIS OF ACCELERATED LONG-TERM FORGETTING IN EPILEPSY
Accelerated long-term forgetting (ALF) is an unusual type of memory disorder recently recognised to affect
some people with epilepsy. People with ALF seem able to learn new information perfectly well, but find that it
“leaks away” over following days. This is distinct from memory problems seen in brain diseases like
Alzheimer’s dementia, where the difficulty is with learning itself. ALF is clinically important. Its cause is
unknown and it may be treatable. It is also scientifically important, having the potential to reveal the
mechanisms by which new memory traces become stabilised (or consolidated) in the brain over time.
This project is investigating the brain mechanisms that underlie ALF. Our hypothesis is that ALF is caused by
abnormal electrical activity in the brain, especially occurring during sleep, which disrupts normal processes of
memory consolidation. This is being investigated in a group of patients with transient epileptic amnesia, a
form of epilepsy in which ALF is particularly common, as well as in healthy people. Participants learn some
information in the evening, have their brain waves (electroencephalogram, EEG) recorded whilst they sleep
and then have their memory tested the following morning. We are examining whether abnormalities in
patients’ brain waves can explain their forgetting.
We also examine participants’ brain waves whilst they learn and whilst they try to remember to see whether
these processes are also abnormal in ALF. This is being done using magnetoencephalography, a technique
that is much better than EEG at localising where in the brain signals arise.
EPILEPSY IN INFANCY: SPECTRUM OF AETIOLOGIES, NATURAL HISTORY AND OUTCOME PREDICTORS
Epilepsy is a brain disorder characterised by recurrent, unprovoked seizures. It affects around 75, 000
children in the United Kingdom, many of whom develop learning and behavioural problems. The incidence of
childhood epilepsy is greatest in the first year of life, and it is this group who remain most at risk for
developmental compromise. Evidence suggests that early control of seizures is associated with better
developmental outcome. However, many children are referred late in the natural history of the epilepsy. This
is in part because there is a lack of knowledge about the specific natural history of the early onset epilepsies
that would allow early identification of children who are at particular risk. The purpose of this investigation is
to address this gap in knowledge by carrying out a population-based study enrolling children at the time of
their diagnosis with epilepsy at under 2 years of age and continuing to follow them up through childhood. We
have carried out testing at baseline (diagnosis) and 1 year follow up. Currently, children are undergoing
further follow up at 2.5-5.5 years, a suitable age for detecting social or cognitive impairments as such skills
normally develop quickly over this period. By relating this new information to what we already know about
the early characteristics of the epilepsy in these children, we will address an important gap in knowledge to
allow earlier identification and treatment of infants at particular risk.
THE CONSEQUENCES OF TEMPORAL LOBE EPILEPSY SURGERY
Uncontrolled epilepsy commonly arises from the brain’s temporal lobe and surgical resection stops seizures
in 70% of patients. This operation, however, may affect language, memory, decision-making vision and
mood. We will use MRI brain scans to investigate these brain functions, which are normally carried out in the
temporal and frontal lobes. We will find out how epilepsy in the temporal lobe, and surgical removal of the
front part of the temporal lobe, affects these functions and the connections of these parts to the rest of the
brain. We will ascertain which MRI scans, taken before surgery, may predict problems afterwards. This will
enable us to minimise the risks of surgery.
By repeating the testing of brain function and vision and MRI scans 3 and 12 months after surgery, we will be
able to see how the brain compensates for the surgical removal of the anterior part of one temporal lobe. We
will also develop new ways of visualising the white matter connections and of integrating this information with
scans that show the brain’s anatomy and function, and we will make these methods freely available to other
NEUROPSYCHOLOGICAL PROFILES OF PATIENTS WITH JUVENILE MYOCLONIC EPILEPSY AND THEIR SIBLINGS
JME constitutes 12 percent of all epilepsies. In some cases, there are subtle abnormalities in the frontal
lobes on MRI scanning, and there has been speculation that JME is associated with frontal lobe or executive
dysfunction. The frontal lobes are important for planning, problem solving, memory and social interactions.
They provide the motivation and cognitive capacity that get us through our daily tasks, and generate
language. All these roles are called executive functions.
1. Are people with JME more likely to exhibit signs of executive dysfunction using routine psychometric tests
compared with a sibling and control? Siblings are included because there is a genetic aspect to JME. Close
relatives can have abnormal EEGs. We want to know if they have subtle executive dysfunction.
2. Are people with JME more likely to display behaviours in keeping with executive dysfunction compared to
3. Does mental effort trigger brief epileptic discharges in JME patients, potentially disrupting how new
memories are formed? This will have implications for how people with JME learn.
The study will provide insights enabling the development of patient centred services for people with epilepsy
FAMILES WITH CHILDREN WITH EPILEPSY: DECISION MAKING AT DIAGNOSIS
This study will investigate the consequences within families of caring for a child with epilepsy. In particular it
considers how diagnosis of epilepsy influences family relationships, especially caring, parenting,
grandparenting and sibling relations. It also focuses on how families respond to uncertainty and changes in
the management of the condition over time and the role of lay beliefs with particular reference to diet in
caring for an epileptic child. The study employs a qualitative research design, involving interviews with 20
children aged 7-14, their main carer and a sibling. Roughly a third of these children will be from families who
have recently been diagnosed and a third from those who have been diagnosed for at least five years. Both
of these groups will be recruited from amongst children attending neurology clinics. A third group will be
recruited from amongst those children being treated using the ketogenic diet. This will enable the project to
further investigate the experiences of families who have lived with epilepsy for some time and sought an
THE ROLE OF ILLNESS REPRESENTATION IN THE EXPERIENCE OF POOR MEMORY IN PEOPLE WITH EPILEPSY: NEW IMPLICATION AND QUALITY OF LIFE.
Although there is little doubt that people with epilepsy suffer from memory impairment, studies do not
consistently demonstrate significant relationships between subjective and objective memory. This study uses
a rigorous methodological design, with subjective and objective measures that assess corresponding
domains (i.e., verbal and visual memory), to investigate the nature of memory complaints by considering
roles for anxiety and depression, possible decline from pre-morbid abilities, and non-memory cognitive
difficulties. The idea that subjective memory complaints may be related to people’s beliefs about their
epilepsy is investigated using the Common Sense Model of illness representations
Hall, K., Isaac, C. & Harris, P. (2009). Memory Complaints in Epilepsy: an Accurate Reflection of Memory
Impairment or an Indicator of Poor Adjustment? A Review of the Literature. Clinical Psychology Review, 29,
Hall, K.E., Isaac, C.L., Harris, P. & Rowe, R. (2008). Using illness representations to understand the nature
of memory complaints in epilepsy. Journal of the International Neuropsychological Society, 14, Suppl.2, 71. 12. IDENTIFYING DEPRESSION IN PEOPLE WITH EPILEPSY ATTENDING THEIR GENERAL PRACTITIONERS’
We explored whether some simple questionnaires could be used in general practice to identify depression in
people with epilepsy. Our study showed that two short scales were very accurate in identifying depression in
people with epilepsy. In fact depression was present in over a third of people. We also asked people with
epilepsy how they would like to get help if they were depressed. People showed quite a range of possible
ways including seeing the GP or talking to friends and family.
This work will help us to understand better how depression in people with epilepsy can be addressed in
Margrove KL, Mensah SA, Thapar AK & Kerr MP (2011) Help-Seeking and Treatment Preferences for
Depression in Epilepsy. Epilepsy & Behavior (in press)
Margrove K, Mensah SA, Thapar AK & Kerr MP(2011) Depression screening for patients with epilepsy in a
primary care setting using the PHQ-2 and the NDDI-E. Epilepsy & Behavior (in press) THE NEUROANATOMICAL BASIS OF FRONTAL LOBE COGNITIVE DYSFUNCTION IN FRONTAL LOBE AND IDIOPATHIC GENERALISED EPILEPSIES
Frontal lobe epilepsy and juvenile myoclonic epilepsy are two common types of epilepsy. Affected individuals
are at risk of cognitive problems including difficulty making decisions, planning and concentrating. Such
difficulties have a bad effect on a person’s ability to function at work and in everyday situations. We can use
brain scans to measure what areas of the brain are working when people are making decisions and doing
other cognitive tasks. We plan to scan people with these two types of epilepsy and find out whether they
have faulty brain function and connections, that are associated with any cognitive problems. We will also
follow people with frontal lobe epilepsy who have surgery to see what cognitive changes take place. The
findings from this study will increase our understanding of these two disorders and provide information that
will help us to better advise people and identify those who would be at risk of further cognitive problems if
they were to have surgery to treat their epilepsy
1. Vollmar C, O’Muircheartaigh J, Barker GJ, Symms MR, Thompson P, Kumari V, Duncan JS, Janz D,
Richardson MP, Koepp MJ. Motor system hyperconnectivity in juvenile myoclonic epilepsy: a cognitive
functional magnetic resonance imaging study. Brain 2011;134(Pt 6):1710-9
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4. O'Muircheartaigh J, Vollmar C, Traynor C, Barker GJ, Kumari V, Symms MR, Thompson P, Duncan
5. Centeno M, Thompson PJ, Koepp MJ, Helmstaedter C, Duncan JS
6. Vollmar C, O'Muircheartaigh J, Barker GJ, Symms MP, Thompson PJ, Kumari V, Duncan JS,
Richardson MP, Koepp MJ. (2010) Identical, but not the same: Intra-site and Inter-site Reproducibility of
Fractional Anisotropy Measures on two 3.0 Tesla scanners. Neuroimage. 2010 15;51(4):1384-9
14. SOCIAL UNDERSTANDING IN CHILDREN WITH EPILEPSY
Children with epilepsy are at increased risk of communication and behavioural problems and deficits in social
cognition may be a contributory factor to poor outcomes. This research involved three studies that assessed
different aspects of social cognition and social attention in a group of children with uncomplicated epilepsy.
The first study involved 55 children with epilepsy and 69 typically developing children. It employed socio-
cognitive and socio-perceptual tasks that asked children to interpret and reason upon mental and emotional
states, assessments of IQ, expressive language and parental report measures of communication and
behaviour. The main findings indicate children with epilepsy had greater difficulty with the socio-cognitive
reasoning task compared to typically developing children beyond IQ and language. The degree of socio-
cognitive impairment was associated with increased parental reports of communication and behavioural
problems in children with generalized seizures. Children with focal seizures showed the poorest performance
across most of the assessed domains and no clear link emerged between socio-cognitive reasoning and
reported problems in this group. The second study involved 57 children (34 with epilepsy) and addressed
mental states attribution processes and executive function. Atypical mental states attribution was associated
with poor executive function in children with epilepsy with increased behavioural problems and this was not
associated with epilepsy related factors. The third study used an eye-tracker to measure social attention and
response inhibition to dynamic displays of gaze and emotion. It involved 59 children (25 with epilepsy).
Children with epilepsy were slower to produce a correct response in conditions that demanded increased
inhibitory control. Analysis of the error latencies also provided evidence of atypical gaze and emotion
processing that was linked to parental reports of social problems in children on and off medications. This may
be a preliminary indicator of social attention deficits that persist beyond active seizures.
Lunn, J. F., Lew, A.R., Tomlin, P., Basu, H., Lewis, C., Roach J., Rakshi, K. and Martland, T. (2010) Social
Understanding in Children with Epilepsy. Paper presented at the British Pyschological Society
Developmental Psychology Section Conference, 12-15 September 2010, London, UK.
Lunn, J. F., Lew, A.R., Tomlin, P., Basu, H., Lewis, C., Roach J., and Martland, T. (2009) Social
Understanding in Children with Epilepsy. Poster presented at the Biennial Meeting of the Society for
Research in Child Development, 2-5 April 2009, Denver, USA.
INVESTIGATING THE RELATIONSHIP BETWEEN SLEEP DISTURBANCE AND LEARNING IN CHILDREN WITH BENIGN EPILEPSY OF CHILDHOOD WITH CENTROTEMPORAL SPIKES (BECCTS)
The recognition of a role for sleep in the consolidation of learning and memory raises the possibility that
chronic sleep disturbance in some epilepsy syndromes restricts children's learning and development. Benign
Epilepsy of childhood with centrotemporal Spikes (BECCTS) is a relatively common form of childhood
epilepsy featuring brief seizures that mostly occur during sleep.
Treatment of this syndrome is guided by an assumption that the syndrome is relatively benign, given that
seizures usually occur at night and children grow out of their epilepsy. However, a number of distinct learning
problems have recently been associated with BECCTS. The aim of our research is to investigate the link
between sleep disturbance and learning in children with BECCTS and the further possibility that learning
problems may be helped with effective treatment.
We will investigate children with BECCTS with a combination of electroencephalography (EEG), sleep
analysis and assessments of learning consolidation. We will analyse EEG, sleep quality and learning ability
to see if there are any links between these factors. We will then repeat the EEG recording, analysis of sleep
and learning tasks after treatment with anti-convulsant medication or placebo. Further data analysis will
determine whether EEG, sleep quality or learning is improved by treatment.
NATURALISTIC STUDY OF THE SHORT-TERM COURSE OF NON-EPILEPTIC SEIZURES
Non-epileptic seizures (NES) look like epileptic seizures but are not accompanied by abnormal electrical
activity in the brain. NES are thought to have psychological causes, such as trauma or stress. Psychological
therapy is considered the treatment of choice for NES, although there is little evidence that it is effective, and
it is not widely available in the NHS. We are planning to do a RCT of a psychological intervention in the
future. This study will tell us how many patients become free of seizures over a five months period after the
diagnosis has been explained to them. This will allow us to calculate the group sizes for our future RCT in
which active psychological treatment after the diagnosis will be compared to no specific treatment.
NATIONAL GENERAL PRACTICE STUDY OF EPILEPSY- LONG TERM
Most long term studies of people with a first epileptic seizure have been hospital-based, and this is likely to
depict epilepsy as a chronic, progressive, incurable disorder. The National General Practice Study of
Epilepsy was set up in the 1980s to follow a group of people in whom the General Practitioner (GP)
The group of people notified to the study has been follow-up since the 1980s, and many articles have been
published. The most recent paper showed that the risk of premature mortality was still increased 20 years
We sent a follow-up form to GPs of survivors in 2009-10 and plan to analyse the outcome in terms of seizure
control. We will use statistical techniques to analyse the time to the first seizure. We will also describe
patterns of seizure outcome (for example, people in whom no further seizures ever occurred, individuals who
had early seizures but later stopped having seizures, or people in whom the first subsequent seizure
occurred many years later). We aim to be able to give people diagnosed with a first seizure a more realistic
idea of what the outcome may be in terms of seizure control.
UK ANTI- EPILEPTIC DRUG REGISTER
The UK Anti Epileptic Drug Register is a surveillance tool for AED with aim to identify the most effective AED
with the least adverse effects for both partial and generalized epilepsies. Patients are invited to provide
information on AED efficacy and adverse effects anonymously. The register is web based but patients can
use a paper version. As of the 4th of September 2011 we have 600 data sets. At the Walton Centre the
register is supported by the IT department and the Clinical Trials Unit. We are grateful for the support from
Epilepsy Action, both financially and by advertising the register. In a small pilot study using the LAEP we
found that in monotherapy Lamotrigine (LTG) was overall the drug with the least adverse effects. In a
separate study just under 50% of patients on Levetiracetam reported aggression towards others as being a
sometimes or always a problem. Large numbers are necessary for the surveillance of the ever increasing
number of AED. We are planning to advertise the register nationwide and have expanded the team.
1. Wieshmann U, Tan GM, Baker G. Self reported symptoms in patients on antiepileptic drugs in
monotherapy. Acta Scan Neurol. accepted for publication.
2. Wieshmann U, Baker G. Self reported Anger and Depression in Patients on Levetiracetam in Mono and
Polypharmacotherapy. Abstract ILAE York 2011.
Rev Asoc Mex Med Crit y Ter Int 2001;15(4):130-137Transporte del paciente crítico en unidadesDr. Elpidio Cruz Martínez,* Dr. Bulmaro Borja Terán,* Dr. José Antonio García García,*Dr. Héctor Lozano Casarrubias,* Dr. Manuel Medina Martínez,* Dr. Fernando Sosa Jarero,*La historia del transporte de pacientes es muy vieja; laThe history of patient transport is very old; the earliestprimer
An accurate breast cancer prognosis, or breast cancer sur-Our goal was to predict survival for each individual. Wevivability prediction, is important as it often guides thehad two approaches: predicting a discrete survival statustreatment course of action, ability to claim additional fi-based on time since diagnosis and other features, and pre-nancial support from the government, actions of