Abstracts

Rationale: Children with generalized tonic-clonic seizures (GTCS) have at least a 1 in 4500 risk of succumbing to sudden unexpected death in epilepsy (SUDEP). Children with poorly controlled GTCS are at higher risk, raising the importance of improving seizure control. Moreover, several studies show families want to be told about SUDEP. For that reason, the American Academy of Neurology, the American Epilepsy Society, the Epilepsy Foundation, and the National Academy of Medicine recommend that clinicians caring for these children make their families aware of this important risk. Yet studies of neurologists demonstrate the majority do not discuss SUDEP with their patients. Methods: We developed a SUDEP module for an existing clinical decision support system, Child Health Improvement through Computer Automation (CHICA) that runs in five primary care pediatric clinics. The module inserts a question asking about seizures in a survey completed on an electronic tablet by caregivers in the waiting room. For children who have seizures, CHICA asks about seizure frequency, medication adherence and barriers to accessing care. CHICA reminds the physician, through the electronic health record (EHR), to discuss SUDEP, and informs the physician of seizure frequency and barriers to care. The physician can document discussing SUDEP and provide computer generated educational materials based upon risk. Prior to implementing the module, we contacted, by phone, parents of children with epilepsy from the study clinics to determine if they had ever discussed SUDEP with their physicians. Results: At the time of this writing, 61 patients were surveyed prior to implementing the CHICA SUDEP module. Thirteen were excluded for refusal or ineligibility. To date, 524 children have been screened for epilepsy by CHICA, and 12 (2.3%) reported seizures. In the pre-implementation surveys, the average age was 10 years (range of <1 to 19) and half were female. Almost 1/3 had not had a seizure in the last year. Most (66%) received epilepsy care from a pediatric neurologist; 25% from a general pediatrician. Only one received care from neurologist not specializing in children. 19.7% of parents reported that their physicians had talked with them about SUDEP, and only 26.2% had heard of SUDEP. Of those whose physicians had talked about SUDEP, 92% were glad the doctor discussed it. Among physicians who were reminded to discuss SUDEP by CHICA, 3 (25%) indicated the child did not have epilepsy. Among the rest, 8 (89%) reported discussing SUDEP. Conclusions: Consistent with previous reports, very few parents of children with epilepsy had spoken with a physician about SUDEP, and almost all were glad they had. In this population, only about a fourth had even heard of SUDEP. However, when a computer-based reminder system recommended discussing SUDEP, nearly all physicians reported they did. Final results of this trial will be available at the AES meeting, but decision support appears to be a promising method for increasing SUDEP discussions in at-risk patients. Funding: Funding for this work was provided by an unrestricted grant from Greenwich Biosciences Inc., the Child Neurology Foundation, and Digital Health Solutions, LLC.