PERFECT Initiative Shows That Children With Epilepsy May Not Be Receiving Treatment For Prolonged, Acute, Convulsive Seizures
Children suffering from prolonged, acute, convulsive seizures may not always receive timely rescue medication in schools and other community settings as intended by their specialist physician, according to the first findings of the PERFECT Initiative. The results were presented as part of a symposium at the ILAE’s 10th European Congress on Epileptology (ECE), in London. The Steering Committee for The PERFECTTM Initiative, which comprises a group of leading clinical epilepsy specialists from six countries across Europe, also highlight discrepancies in comprehensive European guidelines and legal frameworks that ensure children with prolonged, acute, convulsive seizures are treated quickly whether in hospital or in the community, and recommend specific training on rescue medication for all those responsible for the child.[i]
Prolonged, acute, convulsive seizures can pose a significant health threat in children with epilepsy, a neurological disorder affecting nearly one million children and adolescents in Europe.[ii] Evidence suggests that treatment should be given immediately if a seizure persists longer than 5 minutes after onset.[iii] However, in the case of schools, despite the fact that many children are prescribed rescue medication by their doctors, teachers often opt not to administer seizure rescue medication unless specific training or provision has been made, typically via the school nurse. Instead an ambulance may be called, causing possible delays in seizure treatment.[iv]
“The PERFECT Initiative is the first to investigate the discrepancies that often exist in European countries between policy and practice in the treatment of prolonged, acute, convulsive seizures in children,” said Prof J. Helen Cross, UCL Institute of Child Health, Great Ormond Street Hospital for Children and Young Epilepsy. “We found that the differences in clear guidance, awareness and education around the use of rescue medication for treating seizures in children living with epilepsy, ultimately create a shortfall in care that we, as clinicians, intend that they receive, whether in hospital or away from it.”
This first phase of the PERFECT Initiative was designed to examine existing treatment guidelines and legal frameworks and policies for treating prolonged, acute, convulsive seizures in the community, in six European countries (France, Germany, Italy, Spain, Sweden and the UK). The authors found that, while guidelines were effective for in-hospital treatment of prolonged, acute, convulsive seizures, the picture was often different in the community. In many cases, rescue medication consists of intra-rectal diazepam, which can be considered socially inappropriate to administer in the community setting. Whether a child receives rescue medication at school depends primarily on the availability of staff willing to accept responsibility for administering the treatment.1 Key recommendations from the PERFECT Initiative Steering Committee include:1
- Establishing clear links between the treating physician, families and the child’s day-to-day community environment (e.g. schools), allowing for better provision of information on epilepsy and training on seizure intervention for all those individuals responsible for the child
- New and revised comprehensive guidelines to ensure children with prolonged, acute, convulsive seizures are treated according to the treatment plan set by their physician, wherever the seizure occurs
- Individualised treatment plans for every child are established between the treating physician and the family/carers concerned, to help ensure the best possible standards of care for the child away from the hospital setting.
ViroPharma Incorporated (Nasdaq: VPHM), as part of its commitment to help create better care for children with prolonged, acute, convulsive seizures, has organised and funded the PERFECT Initiative in collaboration with a group of leading clinical epilepsy specialists. Vanessa Newman, Associate Director Medical Affairs, Europe, at ViroPharma said: “The PERFECT Initiative was designed to investigate any possible shortfalls in the current approach in Europe to the management of prolonged, acute, convulsive, seizures in children treated in the community with rescue medication. We believe that we can help improve care for children at risk of seizures by supporting collaboration between key stakeholders, identifying opportunities for social integration, and facilitating better education at all levels. We are proud to have initiated PERFECT and look forward to helping support the improvement in care for children with epilepsy that The Steering Committee recommends.”
The second two phases of the PERFECT Initiative include a survey of physicians and nurses who treat children with prolonged, acute, convulsive seizures, followed by a survey of children and their parents regarding their treatment, care, guidance and quality of life. Results of these phases are due to be published in 2013.
About the PERFECT Initiative
ViroPharma, as part of its commitment to help create better care for children with prolonged, acute, convulsive seizures, has organised and funded the PERFECT (Practices in Emergency and Rescue medication for Epilepsy managed with Community administered Therapy) Initiative in collaboration with a Steering Committee group of leading clinical epilepsy specialists. The Initiative aims to document and communicate first of its kind data on the impact of conflict of policy and practice in the treatment of prolonged, acute, convulsive seizures.
The PERFECT Initiative is designed to facilitate collaboration between key stakeholders, identifying opportunities for social integration around children experiencing breakthrough seizures, and supporting means of better education of the condition at the community level. It consists of three phases, a review and comparison of policy and real-world practice, a survey of physicians and nurses who treat children with prolonged, acute, convulsive seizures, and a survey of children and their carers relating to their experiences of breakthrough seizures.
About Epileptic Seizures
Seizures occur because of sudden and abnormal electrical activity in the brain. There are many causes of seizures affecting children; triggers can include the use of medicines, head injuries and certain diseases.
Epilepsy is a chronic condition in which a person has a tendency to have recurrent seizures, normally diagnosed after >2 seizures > 24 hours apart2. Epilepsy is among the most common childhood neurological disorders in developed countries, affecting nearly one percent of the population.[v] There are approximately six million people affected by epilepsy in Europe; nearly one million European children and adolescents have active epilepsy.2 It is anticipated that 25-30% of children will experience breakthrough seizures, despite treatment with anti-epileptic drugs (AEDs). Seizures can last from a few seconds to several minutes and in most cases will cease spontaneously. However, seizures can become self sustaining, and if left untreated after 5 minutes, can lead to prolonged or established status epilepticus (SE), which may require hospitalisation and intensive care.
 Practices in Emergency and Rescue medication For Epilepsy managed with Community administered Therapy
[i] Wait S, et al. The administration of rescue medication to children with prolonged acute convulsive seizures in the community: what happens in practice? Eur J Paediatr Neurol. 2012. doi:10.1016/j.ejpn.2012.07.002. Published early online.
[ii] Epilepsy in the WHO European Region: Fostering Epilepsy Care in Europe. 2010. Available at: http://www.ibe-epilepsy.org/downloads/EURO%20Report%20160510.pdf. Last accessed July 2012.
[iii] Lagae L. The treatment of acute convulsive seizures in children. Eur J Pediatr 2011;170:413-8. [iv] Kriel RL, et al. Home use of rectal diazepam for cluster and acute prolonged seizures: efficacy, adverse reactions, quality of life, and cost analysis. Pediatr Neurol 1991;7:13-17.
[v] Ekinci O, et al. Depression and anxiety in children and adolescents with epilepsy: Prevalence, risk factors, and treatment. Epilepsy Behav 2009;14:8-18.