Creation, Implementation, and Analysis of a Seizure Action Plan
Condition: Epilepsy; Status Epilepticus
MeSH terms: Seizures; Status Epilepticus
Study type: Observational

Summary: 
      Data strongly suggests that aggressive and early treatment of status epilepticus (SE) is
      crucial for seizure abortion and prevention of long-term neurologic sequelae. We propose the
      creation of a seizure action plan, an intervention aimed to guide daily medication use,
      outline pre-hospital seizure first aid and rescue medication use, and direct emergency
      personnel in patients' individualized SE medication algorithm, with implementation through
      the electronic medical record. We hypothesize that the seizure action plan will promote daily
      medication adherence, increase use of home rescue mediation, and improve timeliness of AED
      (antiepileptic drug) delivery, length of hospital stay, and ICU admission rate in episodes of
      status epilepticus.
    

Detailed description: 
      The purpose of this study is the creation, implementation, and analysis of a seizure action
      plan, an intervention aimed to guide daily medication use, outline pre-hospital seizure first
      aide and rescue medication use, and direct emergency personnel in patients' individualized
      status epilepticus medication algorithm, with implementation through the electronic medical
      record. After creation of the action plan, the primary neurologist and patient/caregiver will
      create a patient-specific plan. The action plan will be reviewed and updated as necessary at
      each regularly scheduled primary neurology clinic visit. Two studies will aim at analyzing
      the effectiveness of this intervention. A prospective observational cohort study of patient
      care process and outcomes 18 months before and 18 months after initiation of seizure action
      plan will analyze patients with status epilepticus requiring hospital admission and/or status
      epilepticus that occurs during admission at BCH and measure rescue medication prescription
      and application patterns, timeliness of medication administration during SE, use of
      appropriately dosed AEDs, rate of intubation, significant hypotension, allergic reaction, and
      other adverse events, and hospital length of stay and rate of ICU admissions. A second
      prospective observational cohort study of patient outcome variables 18 months before and 18
      months after initiation of a seizure action plan obtained through parent-reported ICISS
      (Integrated Clinical Information Sharing System)/Trivox data, a web-based platform for
      tracking symptoms and response to therapy, will measure rescue medication prescription and
      application patterns, interval seizure frequency, effect on patient and parent quality of
      life, parent knowledge of AED regimen, and parent self-reported medication adherence.
    

Intervention name(s): Seizure Action Plan
Intervention type(s): Other
Intervention description(s): The action plan will be electronically formatted in the EMR. After electronic creation, the primary neurologist and patient/caregiver will create a patient-specific plan.
Observational model: Cohort
Time perspective: Prospective
Sampling method: Probability Sample
Study population: 
        Children aged 1 month to 21 years presenting to Boston Children's Hospital (BCH) with
        status epilepticus/seizure cluster or who have status epilepticus/seizure cluster during
        admission at BCH who require antiepileptic(s) for abortion and hospital admission. Status
        epilepticus is defined as a single seizure lasting 5 minutes or longer; a seizure cluster
        is defined as 2 or more seizures within 6 hours.

        Children aged 1 month to 21 years with known seizure disorder followed at Boston Children's
        Hospital or satellite clinic and enrolled in TriVox/ICISS Health [(Integrated Clinical
        Information Sharing System), a web-based platform for tracking symptoms and response to
        therapy].