Introduction to use of an acute seizure action plan for seizure clusters and guidance for implementation

It is important for patients with epilepsy and their caregivers, including care partners, to understand the patient's seizure clusters and what to do when they occur. In many instances, seizure clusters are unique to each patient. The knowledge gained from understanding a patient's seizure cluster or seizure pattern provides a foundation for taking prompt action to prevent worsening to prolonged seizures, status epilepticus, and potentially death. Seizure action plans (SAPs), which are similar to the disease-related treatment action plans for other conditions, can be developed by a health care provider (HCP) in conjunction with the patient with epilepsy and/or caregivers, and SAPs are specifically customized for the individual patient and his or her seizure management. However, the current literature lacks unified guidance on how to design SAPs that will help prepare patients and caregivers for rapidly determining and initiating appropriate treatment of acute seizure emergencies in the community and at home. Here, we examine the current usage and value of SAPs for pediatric and adult patients with epilepsy, and we introduce the concept of the acute SAP (ASAP) for use specifically during seizure emergencies, such as seizure clusters. This type of standardized, simplified, and customized plan can rapidly and concisely provide patients and caregivers with a practical protocol to treat a seizure cluster consistently, appropriately, and in a timely manner. Details on potential content and formats of ASAPs are provided. Following this is a discussion of barriers to ASAP use that may affect HCPs or patients and caregivers, including lack of standardization, relevance, and personalization and pitfalls associated with technology. This leads into a discussion of guidance for developing, implementing, and updating ASAPs that suggests ways to address the barriers and ensure that the ASAP is best suited to the patient's needs.