Epilepsy in mainstream and special educational primary school settings

Transcription

1 Seizure 2003; 12: doi: /s (02) Epilepsy in mainstream and special educational primary school settings L. TIDMAN, K. SARAVANAN & J. GIBBS Paediatric Department, Countess of Chester Hospital, Liverpool Road, Chester CH2 1UL, UK Correspondence to: Dr J. Gibbs, Paediatric Department, Countess of Chester Hospital, Liverpool Road, Chester CH2 1UL, UK This population based study compared the prevalence, nature and management of epilepsy between primary school children in mainstream education and those attending a special educational placement (children with special needs). The overall prevalence of epilepsy was 4.3/1000, but was 30 times higher in children with special needs, many of whom also had severe physical disabilities. Seizure types and the proportion of subjects with multiple seizures were similar in mainstream children and those with special needs. Epilepsy syndromes were identified in 74% of children. Although seizures were better controlled in children at mainstream school, 44% of these children did not have well controlled seizures. Children with epilepsy are an educationally vulnerable group and both education and health staff need to be aware of the additional support that many of these children require in all types of primary educational settings BEA Trading Ltd. Published by Elsevier Science Ltd. All rights reserved. Key words: epilepsy; primary school; prevalence; management. INTRODUCTION Epilepsy is one of the most common chronic medical disorders of childhood. There have been relatively few population based studies of epilepsy in childhood and most of these have given little information about seizure types and especially about epilepsy syndromes 1. Many school-aged children with epilepsy are not known to the education authorities 2, and teachers feel that they have inadequate general knowledge of epilepsy and the specific classroom management of children with epilepsy 3. Children with severe epilepsy often have associated learning difficulties 4, 5, and such children have traditionally been educated in special schools or within special educational units. However, since the Warnock committee report 6, most education authorities in the UK have been offering mainstream education to a steadily increasing proportion of children with special medical and educational needs. The present population based study examined the prevalence, characteristics and management of epilepsy in primary school children. The prevalence, nature and treatment of epilepsy were compared between children attending mainstream and special educational placements. METHODS Children with active epilepsy at primary school, living in the mixed rural and urban area of West Cheshire from September 1996 to August 1997 (aged 4 10 years on 1st September 1996), were identified from the local child health computer records. The local child health computer contained the child health surveillance records of children living in West Cheshire and a summary of the school health records of children attending schools in West Cheshire. An additional check for eligible children was made by obtaining the names of children with epilepsy known either to the paediatricians at the local District General Hospital or to the primary school nurses in West Cheshire. The hospital records were examined of all the identified primary school-aged children with epilepsy. Children were considered to have active epilepsy if they had been given a diagnosis of epilepsy by a hospital paediatrician or paediatric neurologist, and were either receiving antiepileptic drugs during the period of the study or had experienced seizures within 2 years of the beginning of the study period. Details of the seizure types and frequency, electroencephalogram (EEG) appearance, antiepileptic /02/$ see front matter 2002 BEA Trading Ltd. Published by Elsevier Science Ltd. All rights reserved.

2 48 L. Tidman et al. medication and additional disabilities were obtained from the hospital records. Seizure types and syndromes were identified from the seizure description recorded in the hospital notes, combined with EEG appearances. Seizure types and epilepsy syndromes were identified according to international classifications 7 9. Seizures were considered to be well controlled if they occurred less than once a month, partially controlled if they occurred every month but not every week and poorly controlled if they were experienced at least weekly. Epilepsy characteristics were compared between children attending mainstream schools (mainstream children) and those attending special educational placements (children with special needs) using χ 2 tests. RESULTS Out of 15,907, 69 primary school children had epilepsy. Sixty of these children were identified from the child health computer records. The other nine were known to the local hospital paediatricians or school nurses, but their diagnosis of epilepsy had not been entered into the child health computer record. The 69 children with epilepsy comprised 39 of 15,528 mainstream children and 30 of 379 children with special needs. This gave an overall 1 year period prevalence of epilepsy in primary school children of 4.3/1000, with the prevalence of epilepsy in children at mainstream school being 2.5/1000 whilst the prevalence of epilepsy in children attending a special educational placement was considerably higher at 79/1000 (P <0.0001). A total of 7 of the children with special needs were attending special educational units within mainstream schools and the other 23 children with special needs were attending special schools. The educational placement depended principally on each child s learning needs rather than the child s epilepsy. Of the 23 children with epilepsy in special schools, 14 were severely disabled and had no independent mobility, whilst none of the children in special educational units attached to mainstream school nor any of the children attending mainstream school had severe physical disabilities. Seizure types are shown in Table 1. Generalised seizures were more common than partial seizures, with tonic clonic seizures and absences comprising the majority of this group. Only absences of short duration with the EEG showing approximately 3 Hz spike and slow-wave activity were classed as typical absences. A larger proportion of children were considered to suffer from atypical absences in which the absences were longer and the EEG demonstrated generalised discharges at a frequency other than 3 Hz or, Table 1: Seizure types in children attending mainstream primary school or a special educational placement (special needs children). Seizures Mainstream Special needs Tonic clonic Clonic 1 0 Tonic 0 1 Atonic 3 2 Myoclonic 4 6 Typical absences 2 1 Atypical absences 10 8 Total generalized 35 * 29 * Simple partial 2 1 Complex partial 6 7 Partial onset with 13 9 secondary generalisation Total partial 21 * 17 * * P>0.1, χ 2 test. more commonly, showed asymmetrical discharges. Although partial seizures with secondary generalisation were more commonly found in children at mainstream school, overall there was no significant difference between the seizure types exhibited by mainstream children and those with special needs. Epilepsy syndromes were identified in 74% of children. Three children (two at mainstream school) had typical absence epilepsy. There is some uncertainty over the existence of an epilepsy syndrome with generalised tonic clonic seizures in childhood, but three mainstream children and two special needs children had a seizure history consistent with this proposed syndrome 10. One special needs child had suffered from West s syndrome and four mainstream children had benign rolandic epilepsy. The most common epilepsy syndrome was localisation-related symptomatic (or presumed symptomatic) epilepsy which was identified in 38 children (21 mainstream and 17 special needs children). Insufficiently detailed neurophysiological or neuroradiological investigations in many cases prevented further classification according to the precise location of the epileptic focus. The treatment of epilepsy is summarised in Table 2. Similar numbers of mainstream children and children with special needs experienced more than one seizure type. Relatively few children were taking more than one antiepileptic drug, irrespective of whether they attended mainstream school or a special educational placement. As might be expected, seizure control was generally better in mainstream children compared to children with special needs. Seizures were considered to be well controlled in 56% of mainstream children whereas among children with special needs many had partially controlled seizures and only 30% had their seizures well controlled. Despite the higher proportion of children at mainstream school with well con-

3 Epilepsy in mainstream 49 Table 2: Seizure control in children attending a mainstream primary school or a special educational placement (special needs children). Mainstream Special needs More than one seizure type 12 * 13 * More than one antiepileptic drug 5 * 7 * Well controlled seizures a 22 ** 9 ** Partially controlled seizures a 5 ** 12 ** Poorly controlled seizures a 12 ** 9 ** a Well controlled, seizures less than one per month; partially controlled, seizures at least monthly but not weekly; poorly controlled, at least one seizure weekly. * P>0.1, χ 2 tests; ** P<0.01, χ 2 tests. trolled seizures and the much lower proportion with partial seizure control, around 30% of children had poorly controlled seizures irrespective of whether they attended mainstream school or a special educational placement. In six of the mainstream children, but in only three of the children with special needs, poor seizure control applied only to absence seizures. DISCUSSION The overall prevalence of epilepsy, of 4.3/1000 children aged 4 10 years in this study, is similar to the prevalence of 3.89/1000 at 7 years and 4.28/1000 at 11 years reported from the British national child development study 11. Other studies in developed countries have produced prevalences for epilepsy in children varying between 3.0/1000 and 5.7/ Prospectively collected data in developed countries is likely to produce higher, and probably more accurate, epilepsy rates 15, while more limited ascertainment of cases may explain the much lower prevalence for epilepsy reported from some developing countries 16. In Rochester, Minnesota, in 1980, the prevalence of epilepsy in children aged 5 9 years was 4.71, which is again similar to the prevalence found in the current study 17. The prevalence of epilepsy appears to have risen steadily in Rochester over the past 40 years, and this has been largely attributed to improved identification of cases in the more recent surveys. The finding of an epilepsy prevalence similar to that reported from other developed countries lends some confidence to the method of case ascertainment used in this study. The prevalence of epilepsy was 30 times higher in children with special needs compared with children attending mainstream primary school. Epilepsy is known to be more common in children with learning difficulties with a prevalence among children with severe learning and physical difficulties as high as /1000 4, 5. In this study, 43% of primary school-aged children with epilepsy attended either a special school or a special educational unit. This compares with as many as 70% of children with epilepsy in parts of the US 18, 33% in Italy 12, and only 25% 15 in Finland requiring some form of special educational provision outside mainstream school. The prevalence of epilepsy is dependent on the definition used for epilepsy. Children were included in this study if they had been diagnosed with epilepsy and had experienced seizures within 2 years of the start of the study period, or were taking antiepileptic medication during the study period. Like some other epidemiological studies, subjects were excluded if they were no longer taking medication and had not experienced seizures during the previous 2 years 11, 19. However, it has been recommended that for epidemiological purposes subjects should be considered to have active epilepsy if at least one epileptic seizure has been experienced within the previous 5 years, regardless of antiepileptic drug treatment 20. Including subjects in the present study who were not taking medication and who had last experienced seizures more than 2 years prior to the start of the study is likely to have produced a higher epilepsy prevalence, but would also have made case ascertainment more difficult. In this study, partial seizures comprised 37% of seizures in both mainstream children and children with special needs. Other studies have generally found a higher proportion of partial seizures 1, 17, 21, perhaps because generalised seizures are more common in younger school-aged children whereas partial seizures predominate in older school-aged children 22. Despite the international classification of seizure types, the categorisation of seizures in clinical practice is not always exact and studies with the most rigorous neurological inquiry have tended to show a higher prevalence of partial seizures 23. In this retrospective study none of the subjects had undergone a video-telemetry EEG or an ambulatory EEG recording and it is possible that a focal element might have been discovered in some of the subjects with generalised tonic clonic seizures if more detailed descriptions and more rigorous investigations had been undertaken. Absence seizures usually comprise 5 10% of seizures in adults and children 17, and about 10% of childhood and adolescent seizures, with about 60% of these being atypical absence seizures 1. The proportion of absences in the present study was higher at 20%, and of these 86% were classed as atypical. More detailed neurophysiological investigation might have revealed that some of these atypical absences represented partial seizures with a predominant impairment of consciousness. Although epilepsy syndromes were identified in a majority of subjects in the present study, some other studies have been able to assign epilepsy syndromes to a higher proportion of subjects 1, 14. Localisation-related, nonidiopathic epilepsies comprise a substantial

4 50 L. Tidman et al. proportion of the identified childhood epilepsy syndromes, but it has been questioned whether all of these nonidiopathic partial epilepies represent true syndromes 24. As previously discussed, more detailed investigations in some of the subjects in the present study may have increased the recognition of focal seizure onset which, in turn, would have increased the identification of localisation-related epilepsy syndromes. Since there is no agreed definition for the grading of seizure control, the definition of seizure control used in the present study was arbitrary. Others have also considered seizures occurring at least weekly to represent poor seizure control 4. However, applying the same grading of seizure control to all seizure types does not take into account that different seizure types are variably tolerated. For example, atonic, tonic and tonic clonic seizures tend to be much more disruptive and more liable to result in injury than absence seizures. Some children in both types of educational placement with poorly controlled seizures were only taking one antiepileptic drug. The risk benefit ratio in severely physically disabled children with intractable epilepsy may not justify the use of multiple antiepileptic drug treatment, but it would be unusual not to offer more than one antiepileptic drug concurrently to children attending mainstream school with poorly controlled seizures. However, this study did not examine whether combination drug treatment had been tried in the past. Although the prevalence of epilepsy was much higher in children attending special educational placements compared with those in mainstream school, the absolute number of children with epilepsy was higher in mainstream school. It was rather surprising to find that both seizure types and the proportion of children with epilepsy experiencing multiple seizure types were similar in each of the primary educational settings. Furthermore, 44% of children with epilepsy in mainstream school did not have well controlled seizures, although overall seizure control was better in children at mainstream school. Absence seizures were the seizure type most often poorly controlled in mainstream children. These absence seizures were likely to be less socially embarrassing and to cause fewer injuries than other seizure types, but poorly controlled absences could seriously impair academic progress. A previous study in the UK also found seizure frequency to be similar in children attending mainstream school or special school 25. Amongst French primary and secondary aged schoolchildren, an increased seizure frequency was noted amongst those at special school, although seizure frequency was not statistically related to the type of school placement 26. Adverse effects on family functioning are related to a child s seizure frequency and the number of antiepileptic drugs required 27, and so the impact on families is likely to be greatest where the child requires a special educational placement. Many of the children with epilepsy in special educational placements had additional medical problems, with over 50% exhibiting a severe physical disability. None of those attending mainstream school had severe physical disabilities. However, within mainstream school, many children with epilepsy struggle academically Poor psychosocial outcome among children with epilepsy appears to be related to associated neurological impairments and learning difficulties Unemployment is high in school leavers with epilepsy, and increases considerably in those with neurological impairments 35, but counselling and carefully planned work experience can increase the rate of employment 36. Since there are more children with epilepsy at mainstream school than in special educational placements, many of whom do not have well controlled seizures, members of staff in all primary educational settings need to understand epilepsy and be aware of the educational implications of epilepsy. Teachers in the UK seem to have a reasonable understanding of epilepsy and the potential effects of this condition on education, but feel that their knowledge is inadequate and would appreciate more support from the school health service 37. With appropriate support, even children with unstable epilepsy can be successfully managed in mainstream school 38. The present study has demonstrated that there are children in all educational settings experiencing a range of seizure types, including multiple seizures, and in almost one-third of the children seizures are poorly controlled. These children require special medical and educational support, but not necessarily a special educational environment, in order to maximise their academic potential and improve their employment prospects and long-term social functioning. REFERENCES 1. Sillanpää, M., Jalava, M. and Shinnar, S. Epilepsy syndromes in patients with childhood-onset seizures in Finland. Pediatric Neurology 1999; 21: Bradley, R. The educational needs of children with epilepsy. In: Epilepsy and Education (Eds J. Oxley and G. Stores). London, Education in Practice, 1987: pp Corbidge, P. Teacher training-attitudes towards epilepsy. In: Epilepsy and Education (Eds J. Oxley and G. Stores). London, Education in Practice, 1987: pp Steffenberg, U., Hedström, A., Lindroth, A., Wiklund, L.-M., Hagberg, G. and Kyllerman, M. Intractable epilepsy in a population-based series of mentally retarded children. Epilepsia 1998; 39: Shepherd, C. and Hosking, G. Epilepsy in school children with intellectual impairments in Sheffield: the size and nature

5 Epilepsy in mainstream 51 of the problem and the implications for service provision. Journal of Mental Deficiency Research 1989; 33: Warnock M. Special Educational Needs. Report of the Committee of Enquiry into the Education of Handicapped Children and Young People. London, HMSO, Commision on Classification and Terminology of the International League Against Epilepsy. Proposal for revised clinical and electro-encephalographic classification of epileptic seizures. Epilepsia 1981; 22: Commision on Classification and Terminology of the International League Against Epilepsy. Proposal for classification of epilepsies and epileptic syndromes. Epilepsia 1989; 30: Roger, J., Bureau, M., Dravet, C., Dreifuss, F. E., Perret, A. and Wolf, P. Epileptic Syndromes in Infancy, Childhood and Adolescence, 2nd Edition. London, John Libbey, Oller-Daurella, L. and Oller, L. F. V. Epilepsy with generalized tonic clonic seizures in childhood. Does a childhood grand mal syndrome exist? In: Epileptic Syndromes in Infancy, Childhood and Adolescence (Eds J. Roger, M. Bureau, C. Dravet, F. E. Dreifuss, A. Perret and P. Wolf), 2nd Edition. London, John Libbey, 1992: pp Kurtz, Z., Tookey, P. and Ross, E. Epilepsy in young people: 23 year follow up of the British child development study. British Medical Journal 1998; 316: Pazzaglia, P. and Frank-Pazzaglia, L. Record in grade school of pupils with epilepsy: an epidemiological study. Epilepsia 1976; 17: Baumann, R. J., Marx, M. B. and Leonidakis, M. G. Epilepsy in rural Kentucky: prevalence in a population of school age children. Epilepsia 1978; 19: Waaler, P. E., Blom, B. H., Skeidsvoll, H. and Mykletun, A. Prevalence, classification, and severity of epilepsy in children in western Norway. Epilepsia 2000; 41: von Wendt, L., Rantakallio, P., Saukkonen, A. L. and Makinen, H. Epilepsy and associated handicaps in a 1 year birth cohort in northern Finland. European Journal of Pediatrics 1985; 144: Younis, Y. O. Epidemiology of epilepsy among school populations in Khartoum Province, Sudan. Journal of Tropical Medicine and Hygiene 1983; 86: Hauser, W. A., Annegers, J. F. and Kurland, L. T. Prevalence of epilepsy in Rochester, Minnesota: Epilepsia 1991; 32: Whitehouse, D. Behavior and learning problems in epileptic children. Behavioral Neuropsychiatry 1976; 7: Goodridge, D. M. G. and Shorvon, S. D. Epileptic seizures in a population of : demography, diagnosis and classification. British Medical Journal 1983; 287: Commission on Classification and Terminology of the International League Against Epilepsy. Guidelines for epidemiologic studies on epilepsy. Epilepsia 1993; 34: Kramer, U., Nevo, Y., Neufeld, M. Y., Fatal, A., Leitner, Y. and Harel, S. Epidemiology of epilepsy in childhood: a cohort of 440 consecutive patients. Pediatric Neurology 1998; 18: Eriksson, K. J. and Koivikko, M. J. Prevalence, classification, and severity of epilepsy and epileptic syndromes in children. Epilepsia 1997; 38: Shorvon, S. D. Epidemiology, classification, natural history, and genetics of epilepsy. Lancet 1990; 336: Revol, M. Non idiopathic partial epilepsies and epileptic syndromes in childhood. In: Epileptic Syndromes in Infancy, Childhood and Adolescence (Eds J. Roger, M. Bureau, C. Dravet, F. E. Dreifuss, A. Perret and P. Wolf), 2nd Edition. London, John Libbey, 1992: pp Kangesu, E., McGowan, M. E. L. and Edeh, J. Management of epilepsy in schools. Archives of Disease in Childhood 1984; 59: Bulteau, C., Jambaque, I., Viguier, D., Kieffer, V., Dellatolas, G. and Dulac, O. Epileptic syndromes, cognitive assessment and school placement: a study of 251 children. Developmental Medicine & Child Neurology 2000; 42: Camfield, C., Breau, L. and Camfield, P. Impact of pediatric epilepsy on the family: a new scale for clinical and research use. Epilepsia 2001; 42: Holdsworth, L. and Whitmore, K. A study of children with epilepsy attending ordinary schools. 1: their seizure patterns, progress and behaviour in school. Developmental Medicine & Child Neurology 1974; 16: Thompson, P. Educational attainment of children and young people with epilepsy. In: Epilepsy and Education (Eds J. Oxley and G. Stores). London, Education in Practice, 1987: pp Austin, J. K., Huberty, G. A. and Dunn, D. W. Academic achievement in children with epilepsy or asthma. Developmental Medicine & Child Neurology 1998; 40: Camfield, C., Camfield, P., Smith, B., Gordon, K. and Dooley, J. Biologic factors as predictors of social outcome of epilepsy in intellectually normal children: a population-based study. Journal of Pediatrics 1993; 122: Hoare, P. The quality of life of children with chronic epilepsy and their families. Seizure 1993; 2: Vermeulen, J., Kortstee, S. W., Alpherts, W. C. and Aldenkamp, A. P. Cognitive performance in learning disabled children with and without epilepsy. Seizure 1994; 3: Kokkonen, J., Kokkonen, E. R., Saukkonen, A. L. and Pennanen, P. Psychosocial outcome of young adults with epilepsy in childhood. Journal of Neurology, Neurosurgery and Psychiatry 1997; 62: Elwes, R. D., Marshall, J., Beattie, A. and Newman, P. K. Epilepsy and employment. A community based survey in an area of high unemployment. Journal of Neurology, Neurosurgery and Psychiatry 1991; 54: Freeman, J. M., Jacobs, H., Vining, E. and Rabin, C. E. Epilepsy and the inner city schools: a school-based program that makes a difference. Epilepsia 1984; 25: Bannon, M. J., Wildig, C. and Jones, P. W. Teachers perceptions of epilepsy. Archives of Disease in Childhood 1992; 67: Lanfear, J. H. and Rashid, C. Who cares for students with epilepsy in mainstream education? Seizure 1998; 7: