- Email: [email protected]
Epilepsy Transition: Let's start planting the seed
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 2 0 ( 2 0 1 6 ) 6 8 4 e6 8 5
Official Journal of the European Paediatric Neurology Society
Letter to the Editor
Epilepsy Transition: Let's start planting the seed
We read with great interest the article by Geerlings and colleagues describing a valuable experience and showing the outcomes of their Epilepsy Transition Clinic in tertiary referral centre in The Netherlands.1 The authors describe their 30-month experience heading a practical and very clever model staffed by a multidisciplinary team (i.e. neurologist/epileptologist, clinical neurophysiologist, an educationalist/occupational counsellor, and a social worker). After three consecutive consultations, a staff meeting provides proper advices, focussing patients' autonomy and vocational training. Moreover, a diagnostic work-up can be suggested for those who need it, as well as treatment changes/alternatives for uncontrolled seizures.1 Their results showed a slightly male predominance (1.25 men: 1 women) with a median age of 18.3 years. Patients with severe mental retardation (IQ < 35) were excluded from their cohort, but a great proportion of their patients had mild mental retardation (19.8%) or IQ scores bellow average (36.2%).1 Similarly, in our 8-year experience of Epilepsy Transition from tertiary paediatric to adult care, only 31.1% of patients presented normal cognition, whereas 69.7% of a control group of age-matched patients referred from the community (i.e. not formally transition from paediatric to adult healthcare systems') had normal cognitive functions; indeed, there was significant statistical difference between those two populations, not only in terms of cognition, but also in several aspects evaluating severity of their seizure disorders.2 In The Netherlands' cohort, even excluding severely compromised patients, almost one-third of patients are still under special education programs, and only 48.1% were considered independent. Additionally, more than 20% of patients showed seizure frequency of at least once a week, and 46.2% were on polytherapy. These numbers reinforce the complexity of epilepsy patients in transition from tertiary centres.2 In fact, the complexity of patients with childhood-onset seizures in transition to adulthood is just one of the several barriers to the development of Transition Programs.3 Adults with intellectual disability and epilepsy often require multidisciplinary team care not always available in adult centres; in addition we have also shown that most neurologists do not feel adequately prepared for managing adults with childhoodDOI of original article: http://dx.doi.org/10.1016/j.ejpn.2016.01.003.
onset epilepsies, particularly when intellectual disability is also present. In our experience, we have found adequate level of confidence as low as 15.4% amongst adult neurologists surveyed in this regard.2 Those two issues e multidisciplinary services shortage & adult neurologists' confidence in childhood-onset epilepsies e are definitely the most challenges for centres starting Epilepsy Transition Programs. We believe that efforts should be undertaken to make childhood-onset epilepsies part of adult neurologists training and certification requirements. It is worth to mention that not all paediatric epilepsy centres have complex populations such as from The Netherlands and ours; for instance, the Liverpool Transition Clinic experience showed 58% of patients with easy-to-treat idiopathic generalised epilepsy, 22% with localisation-related epilepsy predominantly cryptogenic, and symptomatic/cryptogenic generalised syndrome in only 18%; in their initial visit 80% of patients were taking a single antiepileptic drug. Sixtythree per cent had no learning difficulties, and only 1.6% of patients had severe learning difficulties.4 This less complex population also requires careful transition, with special attention to self-management, sexuality, AED teratogenicity, alcohol and drugs, and driving.5 Finally, Geerlings and colleagues recognise the importance of neuropsychologist and educationalist/occupational counsellor participation in their Epilepsy Transition Clinic. We strongly agree with the active collaborations from educationalist/occupational counsellor psychologists for these challenging patients. In our experience, psychiatry was the most required medical speciality e 32.4% were referred to psychiatry e given our patients' comorbidities. Despite the lack of evidence to which model is the best for a proper transition in Epilepsy patients, optimising seizure control and providing early interventions for psychosocial concomitant problems are essential. The Netherlands experience shows a great model of promoting a proper transition in epilepsy patients.
Source of funding None.
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 2 0 ( 2 0 1 6 ) 6 8 4 e6 8 5
Author agreement statement We have read and have abided by the statement of ethical standards for manuscripts submitted to the European Journal of Paediatric Neurology.
references
1. Geerlings RPJ, Aldenkamp AP, Gottmer-Welschen LMC, et al. Evaluation of a multidisciplinary epilepsy transition clinic for adolescents. Eur J Paediatr Neurology January 13 2016;20(3):385e92. http://dx.doi.org/10.1016/j.ejpn.2016.01.003. Published online. 2. Borlot F, Tellez-Zenteno JF, Allen A, et al. Epilepsy transition: challenges of caring for adults with childhood-onset seizures. Epilepsia 2014;55:1659e66. http://dx.doi.org/10.1111/epi.12752. 3. Camfield P, Camfield C, Pohlmann-Eden B. Transition from pediatric to adult epilepsy care: a difficult process marked by medical and social crisis. Epilepsy Curr 2012;12:13e21. http://dx. doi.org/10.5698/1535-7511-12.4s.13.
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4. Appleton RE, Chadwick D, Sweeney A. Managing the teenager with epilepsy: paediatric to adult care. Seizure 1997;6:27e30. http://dx.doi.org/10.1016/S1059-1311(97)80049-0. 5. Jurasek L, Ray L, Quigley D. Development and implementation of an adolescent epilepsy transition clinic. J Neurosci Nurs 2010; 42:181e9.
Felippe Borlot* Danielle M. Andrade Division of Neurology, Epilepsy Genetics Program, Toronto Western Hospital & Division of Neurology, Hospital for Sick Children (SickKids), University of Toronto, Toronto, Ontario, Canada *Corresponding author. E-mail address: [email protected] (F. Borlot) 1090-3798/$ e see front matter © 2016 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejpn.2016.04.006
Official Journal of the European Paediatric Neurology Society
Letter to the Editor
Epilepsy Transition: Let's start planting the seed
We read with great interest the article by Geerlings and colleagues describing a valuable experience and showing the outcomes of their Epilepsy Transition Clinic in tertiary referral centre in The Netherlands.1 The authors describe their 30-month experience heading a practical and very clever model staffed by a multidisciplinary team (i.e. neurologist/epileptologist, clinical neurophysiologist, an educationalist/occupational counsellor, and a social worker). After three consecutive consultations, a staff meeting provides proper advices, focussing patients' autonomy and vocational training. Moreover, a diagnostic work-up can be suggested for those who need it, as well as treatment changes/alternatives for uncontrolled seizures.1 Their results showed a slightly male predominance (1.25 men: 1 women) with a median age of 18.3 years. Patients with severe mental retardation (IQ < 35) were excluded from their cohort, but a great proportion of their patients had mild mental retardation (19.8%) or IQ scores bellow average (36.2%).1 Similarly, in our 8-year experience of Epilepsy Transition from tertiary paediatric to adult care, only 31.1% of patients presented normal cognition, whereas 69.7% of a control group of age-matched patients referred from the community (i.e. not formally transition from paediatric to adult healthcare systems') had normal cognitive functions; indeed, there was significant statistical difference between those two populations, not only in terms of cognition, but also in several aspects evaluating severity of their seizure disorders.2 In The Netherlands' cohort, even excluding severely compromised patients, almost one-third of patients are still under special education programs, and only 48.1% were considered independent. Additionally, more than 20% of patients showed seizure frequency of at least once a week, and 46.2% were on polytherapy. These numbers reinforce the complexity of epilepsy patients in transition from tertiary centres.2 In fact, the complexity of patients with childhood-onset seizures in transition to adulthood is just one of the several barriers to the development of Transition Programs.3 Adults with intellectual disability and epilepsy often require multidisciplinary team care not always available in adult centres; in addition we have also shown that most neurologists do not feel adequately prepared for managing adults with childhoodDOI of original article: http://dx.doi.org/10.1016/j.ejpn.2016.01.003.
onset epilepsies, particularly when intellectual disability is also present. In our experience, we have found adequate level of confidence as low as 15.4% amongst adult neurologists surveyed in this regard.2 Those two issues e multidisciplinary services shortage & adult neurologists' confidence in childhood-onset epilepsies e are definitely the most challenges for centres starting Epilepsy Transition Programs. We believe that efforts should be undertaken to make childhood-onset epilepsies part of adult neurologists training and certification requirements. It is worth to mention that not all paediatric epilepsy centres have complex populations such as from The Netherlands and ours; for instance, the Liverpool Transition Clinic experience showed 58% of patients with easy-to-treat idiopathic generalised epilepsy, 22% with localisation-related epilepsy predominantly cryptogenic, and symptomatic/cryptogenic generalised syndrome in only 18%; in their initial visit 80% of patients were taking a single antiepileptic drug. Sixtythree per cent had no learning difficulties, and only 1.6% of patients had severe learning difficulties.4 This less complex population also requires careful transition, with special attention to self-management, sexuality, AED teratogenicity, alcohol and drugs, and driving.5 Finally, Geerlings and colleagues recognise the importance of neuropsychologist and educationalist/occupational counsellor participation in their Epilepsy Transition Clinic. We strongly agree with the active collaborations from educationalist/occupational counsellor psychologists for these challenging patients. In our experience, psychiatry was the most required medical speciality e 32.4% were referred to psychiatry e given our patients' comorbidities. Despite the lack of evidence to which model is the best for a proper transition in Epilepsy patients, optimising seizure control and providing early interventions for psychosocial concomitant problems are essential. The Netherlands experience shows a great model of promoting a proper transition in epilepsy patients.
Source of funding None.
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 2 0 ( 2 0 1 6 ) 6 8 4 e6 8 5
Author agreement statement We have read and have abided by the statement of ethical standards for manuscripts submitted to the European Journal of Paediatric Neurology.
references
1. Geerlings RPJ, Aldenkamp AP, Gottmer-Welschen LMC, et al. Evaluation of a multidisciplinary epilepsy transition clinic for adolescents. Eur J Paediatr Neurology January 13 2016;20(3):385e92. http://dx.doi.org/10.1016/j.ejpn.2016.01.003. Published online. 2. Borlot F, Tellez-Zenteno JF, Allen A, et al. Epilepsy transition: challenges of caring for adults with childhood-onset seizures. Epilepsia 2014;55:1659e66. http://dx.doi.org/10.1111/epi.12752. 3. Camfield P, Camfield C, Pohlmann-Eden B. Transition from pediatric to adult epilepsy care: a difficult process marked by medical and social crisis. Epilepsy Curr 2012;12:13e21. http://dx. doi.org/10.5698/1535-7511-12.4s.13.
685
4. Appleton RE, Chadwick D, Sweeney A. Managing the teenager with epilepsy: paediatric to adult care. Seizure 1997;6:27e30. http://dx.doi.org/10.1016/S1059-1311(97)80049-0. 5. Jurasek L, Ray L, Quigley D. Development and implementation of an adolescent epilepsy transition clinic. J Neurosci Nurs 2010; 42:181e9.
Felippe Borlot* Danielle M. Andrade Division of Neurology, Epilepsy Genetics Program, Toronto Western Hospital & Division of Neurology, Hospital for Sick Children (SickKids), University of Toronto, Toronto, Ontario, Canada *Corresponding author. E-mail address: [email protected] (F. Borlot) 1090-3798/$ e see front matter © 2016 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejpn.2016.04.006