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CLINICAL CONTROVERSY

Education in epilepsy consensus meeting. Overview of 10 September EEG Round Table Meeting ALISON BOULTON Medical journalist

The management of epilepsy has reached a point of substantial change and vigorous debate. To enable hospital doctors throughout the UK to keep informed on rapidly changing patterns of management for patients with epilepsy, a series of study days have been arranged by the Education in Epilepsy Group (EEG), sponsored by Marion Merrell Dow. This initiative begins with an expert panel, of whom Dr Jolyon Oxley, London (Chairman), and panelists Dr Richard Appleton (Liverpool), Dr Tim Betts (Birmingham), Dr Stephen Brown (Alderley Edge), Mr Brian Chappell (BEA, Leeds), Dr Pamela Crawford (York) and Dr Ley Sander (Chalfont Centre), comprised the first meeting. Each member of the panel made a short presentation on key areas of modern epilepsy care ranging from who should treat epilepsy to a patient’s perspective on the quality of life. The panel then discussed each presentation and modifications were made until a broad consensus was reached. These presentations formed the basis for future specialist discussion at study days throughout Great Britain, which started in November at the David Lewis Centre. This report presents some of the key points made during the panel’s discussion.

INTRODUCTION-DR

JOLYON OXLEY

‘It is extremely important that we and everybody associated with this process realises that this is only the beginning. ‘The process we have chosen is an educational one. We are not seeking to pass an Act of Parliament. We have no particular sanctions 1059-1311/92/040217+06

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at our disposal, nor are we able to bring in new incentives. The objective is to set standards by which practitioners can judge their own performance and perhaps be judged by others.’ Dr Oxley reminded the panel that patients with epilepsy were missing from the discussion, and that their viewpoint should be considered wherever possible. A Review Meeting is scheduled for 1993, to reassess the EEG initiative and to discuss material generated in future study days between 1992-93. The panel then turned to consider each topic area in turn.

‘QUALITY OF LIFE-PATIENT’S PERSPECTIVE’, Ml7 BRIAN CHAPPELL ‘At present we are failing both families and patients with epilepsy. I believe that quality of life depends strongly on quality of service. ‘A quality service that helps as many people as possible to achieve complete seizure control without side-effects makes a vast contribution to people with epilepsy’s quality of life. Social implications and the perceived stigma of epilepsy may disappear when people are seizurefree. ‘Current Health Service reorganization towards a purchaser/provider model may result in financial constraints which prevent local health and social service authorities from referring patients with epilepsy to regional centres of excellence. ‘There should be an expansion of 10 of the number of centres throughout the UK. This should include cities where quality services already exist, for example, Birmingham, Dun@ 1992

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dee, Liverpool and Cardiff. Such centres could remain viable in the current economic climate by generating income for their local health authority. ‘The role of the GP in an improved regional or district service will be critical and an audit would prove essential in establishing a baseline for service. Better integrated services at a regional and district level should also help a GP liaise more effectively with the patient’s local education, employment and social services. An integrated regional network involving different professional services would maximize the opportunities for a patient with epilepsy. ‘The BEA needs to show itself to be a forceful, independent organisation, capable of providing strong membership and togetherness in order to raise its political profile and lobby effectively for better care. ‘As the creation of more specialist posts is unlikely, a key objective of future epilepsy management must be improved education of physicians in general hospital and primary care who are already managing the condition. ‘We should take this opportunity of a new era in epilepsy management to motivate nonspecialists and impress upon them that with new therapies available, they can make a difference to patients’ lives.’ There was general agreement from the rest of the panel on Mr Chappell’s views, particularly regarding funding and the development of better local services.

‘Importance Appleton

of Control in Children’, Dr Richard

‘The correct diagnosis is vital: is it epilepsy or not? Which type of epilepsy or epilepsy syndromes is it? (The correct choice of drug depends on this.) Is there an underlying cause of the epilepsy? (Seventy per cent of epilepsy is cryptogenic.) ‘Misdiagnosis, if you have the condition, is bad enough. But if you don’t have the condition at all-you are in trouble. I have seen a family of three children suffer educational disadvantages and the elder siblings considerable difficulty in securing employment due to an incorrect diagnosis of epilepsy. ‘GPs are under considerable pressure from the family of a child having repeated “funny turns” or “odd movements” to diagnose epi-

lepsy and treat it. The fact that many patients arrive at epilepsy clinics already on medication appears to support widespread GP initiatives to diagnose and treat a patient presenting with seizures. ‘Current UK staffing levels are completely inadequate as there are only 28 paediatric neurologists in the entire country. Given our aim at this meeting to improve epileptic care, this level of staffing is a travesty. ‘A vast improvement could be effected in the care of epilepsy patients at a local level by the creation of nurse specialist posts, similar to those already in existence for the management of diabetes and asthma. ‘The nurse specialist’s role would be divided between assisting the specialist in epilepsy clinics and, more importantly, educating primary healthcare teams, families and school teachers. ‘There are three aims of effecting better control of epilepsy in children: to permit optimal cognitive and educational development, which facilitates the child achieving their maximum academic potential; to achieve good seizure control and reduce psychological and social problems, enabling a person to become a well integrated member of the community and to prevent the development of intractable epilepsy in certain patients by better early control. ‘If a child’s seizures can be adequately controlled, so that ictal and sub-clinical epileptiform activity is reduced (or abolished), the brain has more time to function normally. In addition, a well controlled child can be kept out of hospital in 90 per cent of cases. Time at home is therefore maximized and so is the opportunity to attend school. ‘Sixty to eighty per cent of children with epilepsy can attend a normal, mainstream school, irrespective of whether they have total seizure control or not. It is important to appreciate that children with epilepsy can learn and, subsequently, they can secure employment. ‘Children are often acutely aware of the stress, tension and anxiety that their seizures generate in others, especially family and friends. Some children with epilepsy feel shame, embarrassment and guilt about their condition. These children often have difficulty making and keeping friends. All these aspects are more prevalent when a child’s seizures are uncontrolled. ‘The Latin derivation of rehabilitation is habilis, ableness or competence. This is what

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better control for a child with epilepsy seeks to achieve. ‘Total or complete seizure control should not be the only aim of the management of epilepsy in a child and good seizure control should not be at the expense of the child’s ability to function. ‘Between 25-30 per cent of children are incompletely controlled. With this population, you often have to achieve a balance between the degree of control (important if the child has the more damaging types of seizures with head injuries) and allowing the child to function, both at home and in school.’ During the panel discussion Dr Ley Sander challenged Dr Appleton’s assertion that 75 per cent of all epilepsy begins in childhood. He claimed that data from the National General Practice Study of Epilepsy, a community-based study, showed that only about 25 per cent of epilepsy in the groups studied began in childhood, which is a different picture from the chronic cases seen in the specialist centre. Better immunization and perinatal care might have contributed to this fall. Dr Appleton called epilepsy attributing to difficult childbirth or immunization ‘a myth’, and said that complex genetic, developmental and possibly environmental factors were more influential. Dr Sander maintained that now, at least at community level, 25 per cent of epilepsy was first diagnosed in the elderly. He suggested that this may be because of population changes, resulting in the elderly living longer, but being more at risk for cerebrovascular incidents and brain tumours. The panel decided that further work in this area is needed. The panel agreed that better informed teaching staff are essential for facilitating a better integrated schooling for a child with epilepsy, in addition to full participation in all aspects of school life. Ignorance of the condition, resulting in over-protection by both parents and teachers, is one of the most crucial areas to tackle to ensure better quality of care in the future. The panel discussed the current evidence on whether early seizure control prevents the development of intractable epilepsy ‘in certain patients and it was decided that this point is still controversial. The focus of the panel discussion then moved from the patient to issues relating to the management of the condition.

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‘WHO SHOULD TREAT EPILEPSY?‘, BElTS

DR TIM

‘Before the end of the decade, the GP will be primarily responsible for the care of epilepsy patients in the community. Specialist care will be brought in as required. ‘One of the few good things that I can see coming out of the Health Service reforms is that many GPs are now being obliged to reassess the services they offer. They are beginning to consider their role in care more carefully, now that it is affected by cost considerations. ‘GPs are under pressure to diagnose and treat patients presenting with seizures and once a patient has been labelled as having epilepsy that label is hard to remove. Furthermore it is frequently extremely difficult to persuade the patient to come off medication. ‘Surgical options are becoming an increasingly important part of management for epilepsy patients and should be considered seriously, in the case of uncontrolled, correctly diagnosed epilepsy. ‘The management of epilepsy has centred exclusive on effective drug regimens. Current practice fails to appreciate the value of a holistic approach to therapy: treating the patient who happens to have epilepsy. ‘We should bear in mind that epilepsy care is not just giving different sets of pills. We need to offer social and psychological treatment as well. A GP will be excellently placed to offer that care. It should not be necessary always to have a social worker and a psychologist and the sooner doctors provide that care themselves, the richer our management of epilepsy will become. We need to move away from being mere technicians and treat the whole person.’ The panel agreed that a quicker response time is needed by hospital services. Mr Chappell suggested that patients should be guaranteed a specialist appointment within 14 days of referral by the GP. The panel also felt that surgical options are improving all the time .and should be considered in any consensus statement about modern epilepsy management.

‘ADDITIVE OR MONOTHERAPY’, STEPHEN BROWN

DR

‘Embarking on any drug regimen depends on a long term plan and good communication between doctor and patient.

Clinical controversy

‘Where drug therapy is indicated in a newly diagnosed patient, treatment should start with monotherapy. The dose should be increased until either the seizures are satisfactorily controlled, or until the limit of tolerability is reached. Sixty to eighty per cent of newly diagnosed patients with epilepsy will achieve prolonged remission by this approach. ‘If the first drug fails, a second drug may be added and the dose built up. If seizures then become controlled, the first drug can be withdrawn depending on the patient’s wishes. If the seizures remain uncontrolled despite two drugs, either the first or the second drug should be withdrawn, to reduce therapy to monotherapy once more. The patient should then be reassessed. ‘Withdrawal of one drug while introducing another, as practised by some doctors, is not usually desirable, since if seizures remain uncontrolled or side-effects occur, it is difficult to attribute them to one or other drug. ‘It is important to know how to effect drug changes in the best way. Sometimes patients are admitted to hospital by neurologists and attempts are made to change drug doses in one week. The patient is then discharged since the ward is under intense pressure for beds. It’s hardly surprising under these circumstances that there are problems. ‘Exceptions to the rule of monotheraphy include intermittent adjunctive treatment with clobazam or acetazolamide (both drugs are efficacious for seizures that occur in clusters) and some symptomatic generalized epileptic syndromes where multiple seizure types occur. ‘Both the patient and physician can be reluctant to reduce polytheraphy when the epilepsy appears to be in a good phase. ‘The reason some patients are on polytherapy is that they simply do not wish to come off their other drugs. They are confident that their particular combination works and they are unwilling to risk doing anything which might jeopardize that. However, good communication is the key to facilitating changes in drug regimens, but changes should only be made when the patient feels comfortable with this. ‘The advantages of monotherapy over polytherapy include easier management of toxicity, improved compliance and no drug interactions. Chronic toxicity, including cognitive side effects, may be less likely to occur and overall seizure control may be better. ‘I’m not happy with the current state of

treatment in which much polytherapy is still being practised. However, although monotherapy is not always appropriate, I very much hope that with new efficacious drugs, we will be able to stick to monotherapy with greater success in the future. Maybe guidelines for prescribing should be introduced.’ During the panel discussion Dr Ley Sander declared himself to be ‘a firm subscriber to monotherapy’. However, Dr Sander added, ‘We frequently see patients already embarked upon a course of polytherapy, often taken as many as three drugs at a time.’ The panel agreed that drug changes need time and close supervision, following a plan.

‘WHY, WHEN AND HOW TO MODIFY MEDICATION’, DR LEY SANDER ‘The aim of all AED treatment is to stop seizures altogether with no side effects. If the maximal tolerated dose of a drug does not control the seizures completely or if intolerable sideeffects develop then treatment should be modified. ‘My feeling is that you should always try to use a drug that can be tolerated at the maximum doses needed to control seizures, without too much regard for drug levels. Nowadays I do not routinely use drug levels, unless it is to test compliance. The time to modify medication will depend on the individual seizure pattern of the patient. ‘Once a drug has reached its maximum tolerable dose and is still not working, the possibility of introducing new drugs or changing drug therapy should be discussed meaningfully with the patient. ‘In addition to the patient’s wishes, the presence of side-effects should determine when changes in medication need to be implemented. ‘It is important that we are certain that the patient is fully complying with the drug therapy before we declare it a failure. We also need to reassess our diagnosis before a drug is withdrawn. ‘A new drug should be added gradually to the existing medication. Once an adequate dose is established, the previous drug should be slowly withdrawn in a step-wise fashion. ‘Taking a complete drug history is vital to maximizing future seizure control. Often a drug to which a patient claims to be ‘allergic’ will have been given in an inappropriate com-

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bination or dose and should not be immediately written off. ‘Patients may have been put on new drug regimens every time they see a new doctor and drug therapy may not have been systematic. It is common and correct practice to start therapy at very low doses, so it is possible that a drug may have been judged a failure before optimal dosesarereached. ‘It is important to realize, however, that there are a proportion of epilepsy patients whose condition is intractable, for whom no drug therapy appears to be effective. In this case, one has to try to reduce toxicity, to make their life easier. We are very good at starting a patient on medication; we are not so good at stopping.’ The panel considered that stopping AED treatment should also be considered in its consensus statements. Members recommended that in patients whose seizures are completely controlled by drugs, AED withdrawal should be considered. However, they stressed that in no individual case can the safety of AED withdraw be guaranteed. The panel stated that the risks of relapse are increased if a patient has a long history of active epilepsy, a structural lesion underlying the epilepsy or syndromes such as juvenile myoclonic epilepsy. The panel considered that the risks of recurrence and consequences of a recurrence should be clearly discussed with the patient, who should have the final decision.

‘REQUIREMENT FOR MORE EFFECTIVE TREATMENT’, DR PAMELA CRAWFORD ‘Once a doctor is sure that the patient has epilepsy, referral to specialist care should take place. Most hospital doctors’ knowledge of epilepsy is poor as they simply do not understand that seizures are the end result of many pathologies, nor do they understand the importance of differentiating between partial and generalized seizure disorders. ‘Doctors need to consider the reasons why they treat a patient with epilepsy with antiepileptic drugs. Reasons include the prevention of tonic-clonic seizures and the risk of injury from falls to enable employment and the ability to drive. Many current antiepileptic drugs taken at high doses have unacceptable side-effect profiles. ‘Non-pharmacological treatment for epilepsy is a neglected area. If there is a seizure precipi-

tant, for example, stress, it is more important to deal with the stress than alter medication. ‘However, the search for new drug therapies should be pursued vigorously, due to a significant percentage of patients with epilepsy whose condition remains uncontrolled. ‘This search for new drugs would be more effective if researchers gained more knowledge about the natural history of epilepsy, its neuropathology and neurophysiology. ‘New drugs should be rationally designed to encompass the several points of efficacy. A new AED should be effective and have a low sideeffect profile, particularly with regard to cognitive function, as sedation still remains a major problem of many widely used anti-epileptic drugs. ‘The ideal AED should only be given once or twice a day, with a long half-life. Tolerance should not develop. ‘Drug interactions, are a ‘major problem’, in currently available therapies. I am particularly concerned that future AEDs are not teratogenic. All four major AEDs on the market have shown teratogenicity. ‘Lastly, the new AED must not interact with the contraceptive pill. This remains a real problem for female patients with epilepsy.’

‘EDUCATING

DOCTORS’,

DR JOLYON OXLEY

‘Education for doctors in this important area is most likely to be effective if it is relevant to their needs, requiring a learning style with which they feel comfortable and takes place in an environment which will help them assimilate the information (i.e. not somewhere where they are constantly distracted by other duties). In addition, it must be based firmly on the principles of adult learning. ‘It has been shown that adults learn best when they can see the relevance of what they are learning and they are consulted about the style and content of their course. ‘Learning should be related as closely as possible to the learners’ own experience, and intermittent feedback on progress is extremely helpful. ‘Further education has to help doctors move from passive recipients of knowledge to becoming self-directed and active learners. ‘Teachers should be chosen for their teaching skill as well as their expertise in epilepsy and regular evaluations should taken place to develop and improve the educational programme.

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‘The aim of this meeting has been to set down markers to improve standards of epilepsy care and to try to eliminate the unacceptable. Only when we meet next year will we be able to begin to tell whether, by bringing together experts and promoting discussion based on our own experience, this novel initiative has been successful. I would like to thank Marion Merrell Dow for making it possible.’ Doctors can freephone for further information and registration for the EEG study days on 0800 616175 or write to Dr Grace Lomax, EEG Medical Co-ordinator, MAIC, Croxted Mews, 288 Croxted Road, London. A full report of the advisory panel meeting is being published and can be obtained by contacting your local Marion Merrell Dow representative, or by phoning Martin Ellis at Marion Merrell Dow head office on 081848 3456.

APPENDIX

Fig. 1: Panel members present at first meeting. From left to right: Dr Elliott Brown, Chris Piggott, Dr Stephen Brown, Dr Pamela Crawford, Dr Tim Betts, Dr Jolyon Oxley, Dr Ley Sander, Dr Richard Appleton, Martin Ellis, Brian Chappell.

1. PANEL MEMBERS APPENDIX 2. STUDY DAY DATES

Dr Richard Appleton*, Consultant Paediatric Neurologist, Alder Hey Children’s Hospital, Liverpool Dr Tim Betts*, Consultant Neuropsychiatrist, Queen Elizabeth Psychiatric Hospital, Birmingham Dr Martin Brodie, Director Epilepsy Research Unit, Glasgow University, Glasgow Dr Stephen Brown*, Consultant Neuropsychiatrist, David Lewis Centre for Epilepsy, Alderley Edge Mr Brian Chappell*, Director of Information and Training, British Epilepsy Association, Leeds Dr Pamela Crawford*, Director of Special Epilepsy Centre, Bootham Park Hospital, York Dr John Duncan, Consultant Neurologist, National Hospital, Queen’s Square, London Dr Jolyon Oxley*, Secretary Standing Committee and Postgraduate Medical Education, London (Chair) Dr Edward Reynolds, Consult Neurologist, King’s College Hospital, London Professor Alan Richens, Professor of Pharmacology and Therapeutics, University Hospital of Wales, Cardiff Dr Ley Sander*, Associate Specialist in Neurology, National Society of Epilepsy, Chalfont Centre, Buckinghamshire Dr Simon Shorvon, Medical Director, National Society of Epilepsy, Chalfont Centre, Buckinghamshire Dr William Hall, Genera1 Practitioner, Settle, N Yorks * Present

at the first

meeting

of the panel.

4 11 14 21

December December December January

24 February

1992 1992 1992 1993 1993

Birmingham York St Thomas’ Hospital, London King’s College Hospital/ Maudsley Hospital, London. Royal Infirmary, Edinburgh