CNF Announces 2018 Pilot Project: Utilizing Child Health Improvement through Computer Automation system (CHICA) ® to enhance SUDEP disclosure conversations
February 2018. Child Neurology Foundation (CNF) joins with academic and health care industry experts to improve communication between pediatric neurologists and the families of children living with epilepsy.
In a 2017 practice guideline, the American Academy of Neurology urged health care providers to report risks associated with epilepsy to caregivers of children living with the condition. This includes the risk of sudden unexpected death in epilepsy, or SUDEP, the leading epilepsy-related cause of death.
Digital Health Solutions LLC, the Child Neurology Foundation and Greenwich Biosciences Inc. are working together to design and implement a high-tech tool to automatically generate SUDEP risk screening during routine primary care visits. This tool will provide prompts designed to remind providers to discuss the risk of SUDEP with caregivers.
In 2016 and 2017, through community partner sponsorships, including Greenwich Biosciences, CNF conducted parallel surveys of families and health care providers that revealed a substantial communication disconnect.
“A majority of families wanted to discuss their child’s risk of SUDEP with their pediatric neurologists, but instead were more likely to go to a peer or the internet. We learned that historically, providers were less willing to discuss these topics due to their worry of causing increased anxiety for the caregiver,” said Amy Brin Miller, CNF Executive Director. “Clearly, these were missed opportunities.”
Simultaneously, internal conversations led Greenwich Biosciences to seek collaboration with organizations to improve dialogue around difficult, but important, topics in pediatric epilepsy, such as the risk of SUDEP, said Justin Gover, Greenwich Biosciences CEO.
“CNF sees this innovative collaboration as a strategy aimed at improving this practice in our community, while empowering the essential family-professional partnership,” Miller added.
“Through a questionnaire administered on an electronic tablet, CHICA captures patient-reported data and provides clinical advice to the physician through the electronic health record,” stated Dr. Stephen Downs, President of Digital Health Solutions. “The goal of the collaboration between Digital Health Solutions, CNF, and Greenwich Biosciences is to add a module to generate SUDEP risk screening and advice in the five clinics of the Indianapolis-based Eskenazi Health System.”
The research collaboration contract between Greenwich Biosciences, CNF, and Digital Health Solutions was signed in December. While the SUDEP module is being created, CNF will integrate child neurology expertise in the development of the SUDEP module as well as provide patient education materials on SUDEP and opportunities for caregiver peer support.
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