Last week we covered the story of how a Special Recreation group refused to administer Diastatrectally to kids who have seizure emergencies. Instead of administering the easy to use medicine, the policy was to call the Ambulance, which cost valuable time to the seizure. This very controversy has made the news again after a study shows that 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, which was organized and funded by USA-based ViroPharma (Nasdaq: VPHM). The results were presented as part of a symposium at the ILAE’s 10th European Congress on Epileptology (ECE), in London, UK.
“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, which was organized and funded by USA-based ViroPharma (Nasdaq: VPHM). The results were presented as part of a symposium at the ILAE’s 10th European Congress on Epileptology (ECE), in London, UK.”
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. Evidence suggests that treatment should be given immediately if a seizure persists longer than 5 minutes after onset. 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 (such as Diastat) 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.
First to investigate discrepancies across Europe
“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 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,” Prof Cross added.
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. Key recommendations from the PERFECT Initiative Steering Committee include:
• Establishing clear links between the treating physician, families and the child’s day-to-day community environment (eg, 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
• Individualized 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.
Vanessa Newman, associate director medical affairs, Europe, at ViroPharma noted: “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.”