Future in Mind ReportIBE Survey of Childrenand Teenagers with Epilepsy

An initiative of the International Bureau for Epilepsy supported by UCB© IBE 2006. All rights reserved.

About ‘Future in Mind’

‘Future in Mind’ is an educational initiative by the InternationalBureau for Epilepsy (IBE) to raise awareness of the considerationsand consequences of childhood epilepsy. The ‘Future in Mind’initiative will be of interest to healthcare professionals, parentsand families, teachers and caregivers.

Future in Mind – IBE Survey of Children and Teenagers with Epilepsy

ERIC HARGISIBE Secretary General, USA

MARSHAL MO-SONG HSIH Former Chair, IBE Asia Oceania RegionalCommittee.

Former IBE Vice President, Taiwan

HILARY MOUNFIELDFormer Chair, IBE European RegionalCommittee, UK

PROFESSOR ALEXISARZIMANOGLOUHead of the Epilepsy ProgramUniversity Hospital Robert DebréParis, France

PROFESSOR GUS BAKERProfessor of Clinical NeuropsychologyDepartment of Neurological ScienceUniversity of Liverpool, UK

PROFESSOR TRACY GLAUSERProfessor of Pediatrics and Neurology and Director of theComprehensive Epilepsy Program,Cincinnati Children’s Hospital Medical Center, Ohio, USA

PROFESSOR JOHN PELLOCKProfessor and Chair, Division of ChildNeurology, Virginia CommonwealthUniversity, Richmond, Virginia, USA

Medical and Scientific Panel

Supported by UCB

The role of the medical and scientific panel was to assist in the development of the questionnaires and ensurerelevance to stakeholder groups. The panel also provided assistance in the identification of centres for thedistribution of the survey.

For details about the IBE, please refer to the final page of this report

Introduction

Epilepsy is one of the most common neurologicalconditions in children and young people. We haveknown for a long time that problems with academicstudies, making and sustaining relationships, emotionaldevelopment and behaviour are more common inchildren with epilepsy compared with others. Epilepsytherefore is not only a medical diagnosis, but has socialconsequences that can impact a child’s developmentand future opportunities.

The International Bureau for Epilepsy (IBE) Survey ofChildren and Teenagers with Epilepsy was designed toassess the perceptions of people directly involved withchildhood epilepsy. This is the first time that the viewsof children and teenagers with epilepsy, parents,caregivers and healthcare professionals from around the world have been gathered as part of a single survey on epilepsy.

The aim of this survey was to gain insight to andquantify the real-life effects that epilepsy can have onareas of quality of life, development and opportunitiesfor the future.

This report presents findings of the survey, includingover 1,000 responses from children and teenagers withepilepsy, parents, caregivers and healthcare professionalsfrom 16 different countries.

3

Table 1: Countries involved in the survey and a breakdown ofresponses included in the analysis

Country Responses

Total Children / Parents / Healthcare Teenagers Caregivers Professionals

Austria 69 15 23 31Belgium 83 16 42 25Denmark 15 0 5 10France 89 20 39 30Germany 56 11 22 23Italy 237 48 116 73Norway 19 2 11 6South Korea 47 19 20 8Switzerland 64 14 32 18Taiwan 137 19 104 14UK 123 33 45 45USA 122 15 48 59

Total 1061 212 507 342

Small numbers of surveys were also completed in Canada, Malaysia,Singapore and Spain.

Survey Questionnaire

Survey questionnaires were developed by the IBE in collaboration with the medical and scientific panel. Tailored questionnaires were developed for three groups:

n Children and young people (completed with or without the help of an adult)

n Parents and caregivers

n Healthcare professionals

The questionnaire comprised a combination of multiple-choice and open-ended questions. Questionnaires were designed to gather information on the followingkey areas:

n Demographics (eg, age, gender, type of schooling)

n Seizure frequency

n Whether children / teenagers were takingmedication for seizures and length of time on medication

n Effects of epilepsy and medications

n Time missed from school

n Perceptions about epilepsy (eg, reactions of otherpeople, impact on quality of life, concerns, fears and aspirations for the future)

For healthcare professionals, the survey includedquestions on area of speciality and the volume ofchildren with epilepsy seen in their clinic.

The questionnaires were distributed via physicians whotreat children with epilepsy. Centres were selected toinclude a range of specialities, from general paediatricclinics to specialist epilepsy centres. Participating centreswere asked to complete the healthcare professionalquestionnaire and distribute the appropriatequestionnaire to children and young people attendingtheir clinic and / or their parents or caregivers.

The survey was initiated in May 2005 across 16 differentcountries (Table 1). Questionnaires were translated intothe local written language in each participating country.Pre-paid envelopes were provided for return ofcompleted questionnaires. Responses were analysed byan independent data analysis company - Digitab, UK.

5Future in Mind – IBE Survey of Children and Teenagers with Epilepsy

RESULTS: Children and teenagers with epilepsyFuture in Mind – IBE Survey of Children and Teenagers with Epilepsy

Sample details214 young people (average age 15 years; range: 2-19 years) with epilepsycompleted the questionnaire from 13 different countries (Austria, Belgium,France, Germany, Italy, Malaysia, Norway,Singapore, South Korea, Switzerland,Taiwan, UK, USA). The majority ofrespondents were over the age of 12 years (74%), whilst 23% were either12 years of age or under. Three percentof respondents did not state their age.The gender split among the surveysample was balanced between males(49%) and females (48%). Three percentof respondents did not state their sex.The majority of children and teenagerswho responded to the survey attendedmainstream school (64%). Others eitherattended a special needs school (12%),mainstream school with learningassistance (11%), or received schoolingat home (1%). Five percent receivedother types of education, whilst 7% didnot state their education type. In 12% ofcases an adult completed the question-naire on behalf of the child / teenagerwith epilepsy. For a further 30%,questionnaires were completed by achild / teenager with help from an adult.

Seizure frequencyApproximately two-thirds (65%) of the children and teenagers whoresponded reported seizures. Ofthose who had seizures, frequencycovered a broad range of severities,with a high incidence of uncontrolledseizures including 24% reportingone or more seizures a week (Fig 1).Seizures caused on average morethan a week of school days to belost each year (4.95 ± 11.15 days)per child / teenager with epilepsy.

Emotional impact of epilepsyMore than one-third of the childrenand teenagers who responded tothe survey (36%) have kept theirepilepsy a secret from other peopleat some time, suggesting there isstill a stigma related to the conditionand its manifestations. The mainreasons for this secrecy include afear of being treated differently(38%) and a belief that peopleshould not know (47%). Classmateswere singled out as a group that thechildren surveyed thought likely totreat them differently (Fig 2).

Don’t know

<1 per year

1 per year

1 per 6-12 months

1 per 3-6 months

1 per 2-3 months

1 per month

2+ per month

1 per week

>1 per week

>1 per day

% of responses

0 4 8 12 16

Classmates

Friends

Teachers

Parents

% of responses

15 30 450

“I have missed quite a lot of school due to my epilepsy but I don’t want it to stop me doing anything”

Base: 139 (those who have seizures)

Figure 1: Distribution of seizurefrequency as reported by children andteenagers. Nearly two-thirds of childrenand teenagers who responded reporteduncontrolled seizures (more than oneper year)

Base: 69 (those who feel people treat them differently)

Figure 2: Perceptions of children and teenagers with epilepsy: peopleconsidered to treat them differentlybecause of epilepsy on an ‘often’ or‘very often’ basis

“I worry about what other people think aboutmy epilepsy in case I have a fit as these can bescary for other people”

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Treatment and side effectsThe majority (87%) of respondentswere taking epilepsy medications(mean treatment period 68 months).Of those taking treatment, 53%were on monotherapy and 42%taking more than one medication.Information on the remaing fivepercent was not available. Over athird (36%) associated the problemsthey faced with their epilepsymedication.

When asked specifically about drug-related side effects, more thana third of the children and teenagerswho responded had experiencedside effects in some form or anotherwith weight change (49%),headaches (46%), dizziness (41%)and shaking (33%) most commonlyreported.

Fears for the futureOver a third of the children andteenagers who responded expectedthe condition to hinder their lives in the future, with impact onemployment opportunities (73%),travelling and exploring (37%), andeducation (36%) most commonlyreported (Fig 5).

Information sourcesWhen searching for informationabout epilepsy or epilepsymedication, the internet is the mostcommonly reported gateway (59%)for children and teenagers withepilepsy, followed by informationfrom doctors or nurses (57%) andbooks and magazines (30%).

I worry about what people atschool will think if I have a seizure

I worry about being able to keepup with schoolwork

I am less confident meetingnew people

I avoid trying new activities

I find it difficult to makenew friends

I avoid going on school trips

I worry about having/starting arelationship with a boy/girlfriend

% of responses

0 10 20 30

Getting the job you want

Travelling and exploring

Continuing with education

Getting a boy / girlfriend

Having children

Other

% of responses

0 20 40 60 80

Feeling short tempered or grumpy

Feeling sleepy

Working out sums or other problems

Concentrating

Describing things to other people

Remembering things

Understanding instructions

Feeling sad or tearful

Writing or copying figures

Feeling that you have no energyto do things

Feeling muddled or confused

% of responses

0 20 30

Working out how to do something new

10

Base: 214

Figure 3: Areas of regular concern forchildren and teenagers with epilepsy

Base: 214

Figure 4: Common problems reported bychildren and teenagers with epilepsy

Base: 81 (children and teenagers who believe epilepsy will stop them doingsomething in the future)

Figure 5: Future fears for children andteenagers with epilepsy

A third or more of respondentsreported feelings of being shorttempered or grumpy and sleepiness.More than one in four reportedproblems (either ‘often’ or ‘veryoften’) with concentration anddifficulty with arithmetic (Fig 4).

Common problems reportedChildren and teenagers in the survey reported a range of concernsfrom worrying what people atschool will think if they have aseizure to worrying about starting a relationship with a boyfriend orgirlfriend because of their epilepsy(Fig 3).

RESULTS: Parents and caregiversFuture in Mind – IBE Survey of Children and Teenagers with Epilepsy

Don’t know

<1 per year

1 per year

1 per 6-12 months

1 per 3-6 months

1 per 2-3 months

1 per month

2+ per month

1 per week

>1 per week

>1 per day

% of responses

0 4 8 12 2016

Family members

Teachers

Classmates

Friends

% of responses

0 5 10 15 20 25 30

Base: 370 (those parents / carers whose child has seizures)

Figure 6: Distribution of seizurefrequency as reported by parents /caregivers. More than two-thirds of the children reported on by parents /caregivers experienced uncontrolledseizures (more than one per year)

Base: 218 (who think the child in their care is treated differently)

Figure 7: Perceptions of the parents /caregivers of children and teenagerswith epilepsy: people considered to treat their child differently because of epilepsy with ‘often’ or ‘very often’ frequency

Sample details516 parents or carers of children andteenagers with epilepsy completed the questionnaire from 15 differentcountries (Austria, Belgium, Denmark,France, Germany, Italy, Malaysia,Norway, Singapore, South Korea, Spain, Switzerland, Taiwan, UK, USA).The average age of children andteenagers with epilepsy associated withthese parents or carers was 11 years old(range: 7 months-19 years) with an equaldistribution of males (51%) and females(49%). The majority of these childrenattended either mainstream school or mainstream school with learningassistance (66%). Nearly one-third (30%) required a full- or part-time carer because of their epilepsy, whichwas most commonly from the nuclear family (80%).

Seizure frequencyNearly three-quarters (72%) of theparents and caregivers reported thattheir child or child in their care hadseizures. Frequency of seizuresvaried across the responses, with33% reporting one or more seizuresa week, and 20% claiming one orless seizures per year (Fig 6).Seizures caused, on average, almostone and a half weeks of school daysto be lost each year (7.90 ± 26.01days) per child / teenager, and aworking week (5.05 ± 16.08 days)lost per parent.

Emotional impact of epilepsyNearly a quarter (23%) of parentsand carers stated that they hadchosen to keep their child’s epilepsya secret. The key reason reportedwas a fear that people will treattheir child or child in their caredifferently (62%). This fear is furtherrealised when parents and caregiverswere asked if they had witnesseddifferent treatment for their epilepsysufferer, with over two-fifthsresponding ‘yes’ (42%). Teachersand family members were viewed as most likely to alter theirbehaviour towards the child orteenager as a result of knowingabout their epilepsy (Fig 7).

“She loses concentration and sometimes I don’tthink the teachers fully understand that she can’talways keep up with her work”

Parental concernsWhen prompted regarding areas of concern for their child or child in their care, the most commonresponses were ability to keep upwith schoolwork (35%), learn newthings (27%) and take part in sportsand other hobbies (27%). However,there were many concerns for whichalmost one in four of the parents /caregivers in the sample admitted tooften or very often worrying about,such as reduced self esteem andreduced quality of life (Fig 8).

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Fears for the futureNearly two-thirds of parents / carersof children and teenagers withepilepsy (65%) expect the conditionto hinder the child’s life in the future,with impact on potential to liveindependently (62%), employmentopportunities (60%) and continuingwith education (47%) mostcommonly reported (Fig 10).

Ability to keep upwith schoolwork

Learning new things

Joining in sports orother hobbies

Confidence to joinnew activities

Reduced self esteem

Reduced quality of life

Making new friends

Going on school trips

% of responses

0 10 20 30 40

Living independently

Getting the job they want

Continuing with education

Travelling and exploring

Having children

Getting a boy / girlfriend

Other

% of responses

0 10 20 30 40 50 7060

Concentrating

Working out sums or other problems

Understanding instructions

Describing things to other people

Remembering things

Working out how to do something new

Feeling short tempered or grumpy

Feeling sleepy

Writing or copying figures

Feeling muddled or confused

Feeling sad or tearful

% of responses

0 30 45

Feeling that you have no energyto do things

15

Base: 516

Figure 8: Areas of regular concern for parents / caregivers of children and teenagers with epilepsy

Base: 516

Figure 9: Common problems for childrenand teenagers with epilepsy as reportedby their parents or caregivers

Base: 337 (believe epilepsy will stop their child doing something theywould like to doin the future)

Figure 10: Future fears for children andteenagers with epilepsy as reported byparents and caregivers

Treatment and side effectsIn nine out of ten cases (90%),parents / caregivers reported thattheir child or child in their care wasprescribed epilepsy medications(mean treatment period 59.4months). Of those taking treatment,48% were on monotherapy and49% taking more than onemedication. Information on theremaing three percent was notavailable. More than four out of 10 (44%) thought that medicationcould be linked to the difficultiesexperienced by their child.

When asked specifically about drug-related side effects, over a third(38%) of respondents reported thattheir child or the child in their carehad experienced some side effects,with weight change (49%), shaking(27%) and headaches (26%) mostcommonly reported. When asked ifthe short- and long-term side effectsof epilepsy medication was a concern,nearly half (48%) of parents / carersclaimed to worry on a regular basis.

Common problems reportedParents and caregivers highlighteddifficulties with concentration levels(41%), difficulty with arithmetic(38%), understanding instructions(37%) and describing things toothers (33%) as common problemsexperienced by their child (Fig 9).

Information sourcesWhen searching for informationabout epilepsy or epilepsymedication, doctors or nurses arethe first port of call with parents /caregivers (64%) followed by theinternet (53%). More than a third of responders had consulted anepilepsy counsellor (36%). “He can’t go on field

trips because there isn’t a nurse to go with him”

Over a quarter of the sample saw atleast four children or teenagers withepilepsy on a daily basis (27%) withalmost half (47%) seeing at least onechild / teenager a day. Frequency ofconsultations varied across the sample,with one-third (33%) of the healthcareprofessionals who responded seeingtheir patients on a monthly basis butmore than a quarter seeing theirpatients once every six months or less (27%).

Increased seizure frequency was theleading reason for consultation (77%)followed by routine practice (52%).

RESULTS: Healthcare professionals11Future in Mind – IBE Survey of Children and Teenagers with Epilepsy

Information sourcesThe majority of responders (84%)directed their patients and theirparents / carers to sources ofinformation about epilepsy. Themost commonly advised sourceswere patient leaflets (74%) andpatient organisations (71%). Alsopopular were books and magazines(40%) and the internet (39%). Only a quarter of respondersdirected their patients and or theirparents / carers to an epilepsycounsellor (27%).

Sample details359 healthcare professionals workingwith children and teenagers withepilepsy completed the questionnairefrom 16 different countries (Austria,Belgium, Canada, Denmark, France,Germany, Italy, Malaysia, Norway,Singapore, South Korea, Spain,Switzerland, Taiwan, UK, USA).

Paediatricians were the largest group(33%) followed by neurologists andnurses (23% and 21% respectively).

About a third of respondents (29%)were made up of other healthcareprofessional groups.

Priorities and requests forinformationThe most common aspect ofepilepsy that children and teenagersor their parents / caregivers askedfor advice or information about wasreducing seizure frequency (94%).Cognitive (79%) and physical (75%)side effects of AED therapy werealso high among the concerns ofpatients and parents / caregivers (Fig 14).

Fears for the futureMore than three in five of thehealthcare professionals questionedfelt psychological development(64%) and schoolwork /performance in exams (59%) wereregularly impacted by epilepsy.Future employment opportunities(56%), gaining independence (53%)and intellectual development (51%)were all reported by at least half ofthose questioned (Fig 17).

General Practitioner

Epileptologist

Neurologist

Nurse

Paediatrician

% of responses

0 5 10 15 20 25 30 35

Increased seizure activity

Routine practice

Diagnostic opinion or tests

Side effects from AEDs

Emergency visit

Poor compliance to AEDs

Parental concern/anxiety

Problems at school

Seeking info on new treatments

Assessment for benefits/care

Not stated

% of responses

0 20 60 8040

Reducing seizure frequency

Cognitive/non-physical side effects of AEDs

Physical side effects of AEDs

Taking part in sport or physical activity

Becoming independent/dealing with parental concern

Stopping AED treatment

Prospect of obtaining a driver’s licence

Risk of injury during seizure

Coping with schoolwork/exams

Effects of AEDs on other medications

Future employment/disclosing epilepsywhen applying for jobs

% of responses

0 80 100

Explaining epilepsy to friends/boy/girlfriend

604020

Risk of epilepsy related death

Psycological develoment

Schoolwork/performancein exams

Future employmentopportunities

Gaining independence

Intellectual development

Adult relationshipsand family

Making and sustainingfriendships

Family holidays

% of responses

0 10 20 30 40 50 60 70

Cognitive side effects

Somnolence

Affect on mood

Weight change

Skin rash

Headaches

Shaking

Affect on energy

Dizziness

Hirsuteness

Changes to your gums

% of responses

0 90

Not stated

30 60

Base: 359 (multiple answers permitted)

Figure 11: Fields of expertise within thehealthcare professional sample

Base: 359

Figure 13: Most common reasons for consultation

Base: 359

Figure 14: Aspects of epilepsy childrenand teenagers or their parents / carersfrequently ask for advice / informationabout

Base: 359

Figure 16: Side effects that healthcareprofessionals think it is important to avoid for children and teenagers with epilepsy

Base: 359

Figure 17: Areas of life most commonlyaffected by childhood epilepsy accordingto healthcare professionals

More than 4 per day

1-3 per day

1-6 per week

1-4 per month

<1 per month

Not stated

% of responses

0 10 20 30

Base: 359

Figure 12: Volume of children andteenagers seen for consultation

Having difficulty payingattention

Feeling sleepy

Having problems with memoryor learning new information

Feeling short temperedor grumpy

Feeling that they haveno energy to do things

Feeling muddled or confused

Feeling sad or tearful

% of responses

0 10 20 30 40 50 7060

Base: 359

Figure 15: Common problems in childrenand teenagers with epilepsy as reportedby healthcare professionals

Treatment and side effectsConcentration and attention (60%), sleepiness (54%), problemswith memory and learning newinformation (47%) as well asfeelings of short-temperedness orgrumpiness (30%) were among themost common areas of impairmentseen by healthcare professionalsdealing with children and teenagerswith epilepsy.

Over three-fifths (62%) of healthcareprofessionals felt that these changeswere related to epilepsy medicationswith a quarter unsure (25%) and aminority (13%) who felt medicationwas not involved in cognitive orbehavioural changes.

When asked specifically about the drug-related side effects it isimportant to avoid for children andteenagers with epilepsy, 86% ofhealthcare professionals mentionedcognitive side effects, approximatelyseven in 10 (68%) reportedsomnolence and over half statedmood changes and weight change(58% and 56% respectively; Fig 16).

Conclusion

This survey is the largest and most diverse of its kind in childhood epilepsy - gathering information fromchildren, parents and caregivers, and healthcareprofessionals from around the world. Epilepsy variesconsiderably across individuals and this survey involves a range of experiences regarding children and teenagersof different ages and backgrounds and with epilepsy of varying severities. Seizure frequency reported in thissurvey reflects a predominantly uncontrolled populationand therefore the sample may not be representative ofall children and teenagers with epilepsy.

According to the results of this survey, commonconcerns about the impact of epilepsy are shared acrosschildren and teenagers, parents, carers and healthcareprofessionals. Most notable are worries about futureemployment and independence.

Survey findings show that it is not only children andteenagers who keep their epilepsy a secret, but alsotheir parents / caregivers. The key reason given acrossboth groups was a fear of being treated differently. This demonstrates that stigma still exists around epilepsy and this stigma has an impact on the perceptions andbehaviour of children and teenagers with epilepsy andtheir families.

Achieving seizure freedom was highlighted byhealthcare professionals as the overwhelming priorityfor the vast majority of children and teenagers withepilepsy and their parents or caregivers. Almost allhealthcare professionals who responded to the surveystated that nearly all requests for information fromchildren and their parents were related to reducingseizure frequency. Similarly, increased seizure frequencywas the most commonly cited reason for consultation.

Side effects related to epilepsy treatment werecommonly reported by all groups. Of these, cognitiveproblems including difficulties with concentration and memory were rated as the most concerning.Approximately one in three children / teenagers andparents / caregivers thought that problems experiencedin day-to-day life were related to side effects of currentepilepsy medications.

We know that a diagnosis of epilepsy in a child has far-reaching consequences for the entire family. This is highlighted in the survey from parents reporting the need to take time from work or give up workcompletely in addition to concerns about the futureindependence of their child.

No significant differences were observed in findingsfrom different countries. However, no direct conclusionscan be made due to the small numbers for somecountries involved therefore, for the purposes of dataanalysis results from all countries were combined.

This survey documents some of the real-lifeconsequences of childhood epilepsy and highlightsimportant challenges and issues faced by children withepilepsy and their families. Ensuring that children are as free from seizures as possible and minimising theside effects of treatment must be the primary goal ofepilepsy management.

It is hoped that through improving the understandingof the perceptions, challenges and consequences ofchildhood epilepsy, the results of this survey and theoverall ‘Future in Mind’ initiative will prompt action to optimise management for children and teenagerswith epilepsy.

Future in Mind – IBE Survey of Children and Teenagers with Epilepsy 13

n Children with epilepsy typically miss anything between 2 and 18 days of school every year due touncontrolled seizures. Parents lose a similar amount of time from work as a direct result of their child's epilepsy

n More than one-third (35%) of children / teenagers avoid telling others about their epilepsy due to the fear of being treated differently. Similarly, nearly a quarter (23%) of parents choose to keep their child'sepilepsy a secret

n Children with epilepsy continue to believe that they may be discriminated against because of their medicalcondition - a fear shared by parents and caregivers

n Nearly two-thirds of parents or caregivers expect epilepsy to hinder the life of their child or child in theircare in the future, particularly in relation to employment, education and potential for independence. This is a concern shared by more than a third of children and teenagers

n Treatment side effects are a key issue for children and their parents - especially weight gain, shaking and headaches

n Over a third of children and teenagers with epilepsy (36%) and more than four out of 10 (44%) parentsor caregivers think that problems experienced are due to current epilepsy medication

n Increased seizure frequency and treatment side effects are among the most common factors thathealthcare professionals are asked to deal with when managing epilepsy

n Almost all requests for information or advice are regarding reducing seizures or dealing with or avoidingside effects of medication

n The internet is the most common sources of information about epilepsy and medication accessed bychildren / teenagers (59%), while the medical profession is the preferred source for parents / caregivers(64%)

Survey key findings

Future in Mind – Critical Years Review

PRESIDENT SUSANNE LUND, SWEDEN

SECRETARY GENERALERIC HARGIS, USA

TREASURERMIKE GLYNN, IRELAND

VICE PRESIDENT EUROPEATHANASIOS COVANIS, GREECE

ILAE PRESIDENTPETER WOLF, DENMARK

ILAE SECRETARY GENERALSOLOMON MOSHÉ, USA

VICE PRESIDENT LATIN AMERICACARLOS ACEVEDO, CHILE

VICE PRESIDENT SOUTH EAST ASIA ANCHOR HUNG, HONG KONG

VICE PRESIDENT WESTERN PACIFICSHUNG-LON LAI, TAIWAN

IMMEDIATE PAST PRESIDENTPHILIP LEE, UK

ILAE TREASURERMARTIN BRODIE, UK

To find out more about the IBE, please contact:

International Bureau for Epilepsy253 Crumlin Road Dublin 12 IrelandTel. + 353 1 456 0298 Fax. + 353 1 455 4648 Email. ibedublin@eircom.net

or visit the IBE website: http://www.ibe-epilepsy.org

IBE International Executive Committee

AcknowledgementsThe IBE wishes to thank everyone who has taken partin this survey. The findings provide an important andcurrent view of the needs and challenges faced bythose touched by childhood epilepsy. We hope that thereport of these results will help prompt a change inperceptions and priorities in order to provide the bestpossible care for children and young people withepilepsy to enable them to live as full a life as possible.