Improving Patient Communication About SUDEP
Condition: SUDEP; Epilepsy
MeSH terms: Epilepsy; Sudden Unexpected Death in Epilepsy
Study type: Interventional

Summary: 
      Children with generalized tonic-clonic seizures (GTCS) have about a 1 in 4500 of succumbing
      to sudden unexpected death in epilepsy (SUDEP). For that reason, the American Academy of
      Neurology recommends that clinicians caring for these children make their families aware of
      this small but important risk and provide appropriate supportive follow-up resources.
      Moreover, existing evidence suggests that children with poorly controlled GTCS have a
      strikingly increased odds of SUDEP, 3-24 fold, raising the importance of improving seizure
      control.

      Clinicians caring for these patients have multiple issues to address in the typical visit.
      The investigators propose to use information technology to help providers assure that
      addressing SUDEP is incorporated into their routine care. The investigators have developed
      the Child Health Improvement through Computer Automation system (CHICA), a computer based
      clinical decision support system for pediatric care. CHICA captures patient reported data in
      the waiting room and prioritizes clinical advice to the physician through the electronic
      health record (EHR).

      CHICA is used in five primary care clinics in the Eskenazi health system where it supports
      general pediatric care. The goal of this project is to test the effectiveness of a SUDEP
      module in this setting where CHICA is already in use - with a future goal of developing a
      full suite of CHICA modules for child neurologists.
    

Detailed description: 
      Specifically, the investigators propose the following:

      Aim 1: Add a "SUDEP module" to CHICA to identify children at increased risk of SUDEP, provide
      patient education materials that the clinician can share with the families, and recommend
      timelier follow-up with a child neurologist. The SUDEP module will be added to the existing
      installation of CHICA in the Eskenazi Health System in Indianapolis, IN so that SUDEP risk
      screening and advice are generated automatically in the setting of routine primary care in
      the 5 Eskenazi clinics.

      Aim 2: Interview families of patients with epilepsy to determine if their pediatricians
      shared the SUDEP information and/or referred them to their neurologist. Families whose
      children are at risk for SUDEP will be identified through CHICA. The investigators will
      utilize the Pediatric Practice-based Research Network (PResNet) to follow-up these families
      by phone after their visits with the pediatrician. PResNet will determine if SUDEP was
      discussed, if a handout was provided, and if SUDEP has been discussed previously by their
      pediatrician or neurologist.

      Aim 3: The investigators will assess physician and staff satisfaction regarding the SUDEP
      module of CHICA. Each year, PResNet will conduct a satisfaction survey among the clinic
      physicians and staff that use CHICA. The survey consists of general questions about CHICA
      that are asked every year and module-specific questions about new functionality that has been
      added.
    

Intervention name(s): CHICA SUDEP module
Intervention type(s): Behavioral
Intervention description(s): CHICA reminds physicians to counsel patients/families about the risk of SUDEP.
Allocation: Non-Randomized
Intervention model: Sequential Assignment
Masking: None (Open Label)
Primary purpose: Health Services Research
Keywords: SUDEP; Epilepsy