Pediatricians, Pediatric Neurologists, Patient Advocates, and Industry Partner to Create High-Tech Risk-Screening Tool for Children with Epilepsy
Digital Health Solutions (DHS), the Child Neurology Foundation (CNF), and Greenwich Biosciences began a collaborative effort to develop a digital tool that will prompt providers to communicate with caregivers of children living with epilepsy about the risk of sudden unexpected death in epilepsy (SUDEP) and associated risk factors. The Centers for Disease Control and Prevention reports that there are 470,000 children living with epilepsy in the US. In April 2017, the American Academy of Neurology (AAN) published a guideline codeveloped with the American Epilepsy Society and the International Child Neurology Association that strongly recommends health care providers share information about the rare risk of SUDEP and the risk factors for SUDEP with parents and caregivers of children living with epilepsy. Development of a high-tech screening tool for tracking risk factors of SUDEP is intended to promote such communication.
Specifically, the AAN guideline cites research showing that, subject to cultural influence, people with epilepsy and their families prefer to know about the risk of SUDEP, even when probability of such an event is low. The recommendation notes that although this information can cause anxiety that can be lessened by noting the risk is rare and discussing the number of people per year who do not experience SUDEP as well as the number who do, which is approximately 1 in 5,000.
The guideline goes on to discuss the risk factors for SUDEP, which include, but are not limited to, having 3 or more generalized tonic-clonic seizures per year, sleeping in a room alone or without remote monitoring for patients younger than 10 years, and having uncontrolled epilepsy. The latter of these makes the case for the importance of adherence to treatment.
Executive Director of the CNF, Amy Brin Miller, had informed Greenwich Biosciences that parallel surveys of families and health care providers in 2016 and 2017 revealed a substantial disconnect in that families wanted to discuss the risk of SUDEP with their pediatric neurologists, but instead were more likely to go to a peer or the internet. Historically, providers have shied away from these discussions due to concerns about increasing anxiety for the family or caregiver.
Miller said. "Clearly, these were missed opportunities. CNF sees this innovative collaboration as a strategy aimed at improving this practice in our community while empowering the essential family-professional partnership."
CNF and Greenwich Biosciences are collaborating with DHS to use their software, the Child Health Improvement through Computer Automation (CHICA), which helps physicians proactively identify problems faced by their pediatric patients. CHICA captures patient- or family-reported information via a questionnaire administered on electronic tablets and integrates that information with the electronic health record (EHR).
The announced collaboration aims to include risk-factors for SUDEP in the questionnaire so that the clinician may then be prompted by EHR software to initiate a discussion about risk factors for SUDEP with the patient and/or their family and caregivers. 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. DHS will test the system in five clinics in the Indianapolis-based Eskenazi Health System to measure its efficacy.
Justin Gover, CEO of Greenwich Biosciences said, “(the company) is motivated by our mission to help address the unmet needs of the epilepsy patient community. This includes better strategies to enable conversations between health care providers and caregivers about the risk of SUDEP. Our goal is to strengthen the connection between providers, patients and caregivers by facilitating informed discussions to help ensure that SUDEP-risk screening and advice are part of at-risk patients' routine primary care visit."